The Campaign to End AIDS (C2EA) is a diverse, exciting coalition of people living with HIV & AIDS, their advocates and their loved ones. Together, we're demanding that our leaders exert the political will to stop the epidemic, in the U.S. and abroad, once and for all.

NY State officials assert that low-income communities and people of color have struggled with the devastating effect of the AIDS epidemic for far too long and remain disproportionately affected by the disease.

NY State officials call on Albany leaders to end the epidemic for an AIDS-Free New York by 2020.

In a letter to Assembly Speaker Carl Heastie and Senate Majority Leader Dean Skelos, more than 30 members of the Black, Puerto Rican, Latino, and Asian Legislative Caucus—and other lawmakers—urge legislative leaders to increase funding for HIV and AIDS programs.

Gov. Andrew Cuomo has allotted $10 million in his budget for his End the Epidemic initiative. He also has earmarked a small amount of nearly $440 million in JP Morgan mortgage settlement funds for rental assistance for HIV and AIDS patients.

But legislators say more is needed to address the deadly disease statewide and to stop its spread in minority communities.

“Arguably, nowhere is the impact more pervasive than in communities of color,” the lawmakers wrote. They said that they want “more substantial resources,” but don’t ask for a specific dollar amount. “Every statistical measure has shown that race is a significant factor in calculating risk for contracting HIV, and the disparity has only widened over time,” the letter says.

A state Department of Health study released last year showed that there were 55,546 members of the black community statewide living with HIV or AIDS as of December 2012. The number for the Hispanic community was 42,287. The white community had 27,497 cases.

A majority of New Yorkers living with HIV or AIDS reside in New York City. In Albany County, there were 1,020 HIV and AIDS cases, excluding the prison population. Rensselaer County had 240 cases, Schenectady County had 380 cases and Saratoga County had 169 cases, bringing the four-county total to 1,809.

Newly diagnosed HIV cases statewide fell to 3,316 in 2012 from 5,666 in 2000, the earliest recorded date in the study. New AIDS cases across New York decreased from a high of 14,636 in 1993 to 2,370 in 2012.

The decline was highlighted by Cuomo last year when he announced plans for his End the Epidemic initiative, which included assisting undiagnosed HIV patients find health care, getting patients on anti-HIV therapy and providing high-risk people with HIV prevention drugs.

“Thirty years ago, New York was the epicenter of the AIDS crisis,” Cuomo said at the time. “Today I am proud to announce that we are in a position to be the first state in the nation committed to ending this epidemic.”

The governor set a goal of limiting new HIV infections to no more than 750 by 2020.

Cuomo’s End the Epidemic Task Force is waiting for him to accept a series of recommendations that include providing housing assistance for some HIV and AIDS patients and the passage of a bill that would prohibit discrimination against transgender New Yorkers.

The lawmakers’ letter said that fully implementing the task force’s plan would lead to averting 10,851 new HIV infections and save the state nearly $4 billion in public health spending.

“Other states, and we’ve gotten inquiries from other parts of the world, are looking to us to say, ‘Can you share this plan?’” said Perry Junjulas, executive director of the Albany Damien Center and a task force member. “It’s really where New York has an opportunity, as the state that is most impacted by HIV in the United States, to really be a leader in ending this epidemic.”

Housing Works Announces the 11th Annual Design on a Dime and Groundbreaker Awards Dinner

New York, New York – Join us for New York City’s most popular interior design benefit, Housing Works’ Eleventh Annual Design on a Dime. Held at the Metropolitan Pavilion in Chelsea, the 3-day event (April 23-25, 2015) features over 60 of the world’s top interior designers, who create unforgettable room vignettes with new merchandise, which is donated and then sold for up to 70 percent off retail pricing.

Founding Chair James Huniford and Honorary Chair Lara Spencer, Co-host of ABC’s Good Morning America, will be joined by Co-chairs Michael Boodro, Editor in Chief, ELLEDECOR, Todd Oldham, Designer and President of L-7 Designs Inc., George Oliphant, Host of NBC’s George to the Rescue, Evette Rios, Interior Designer and Correspondent for ABC’s The Chew, for this 11th annual event. Sponsoring Design on a Dime, is ELLEDECOR, National Media Sponsor, and Ralph Lauren Paint, the exclusive Paint Sponsor who will also be providing wall coverings.

The ticketed VIP Opening Night Reception will take place on Thursday, April 23, 2015. Attracting a star-studded crowd, the Opening Night Reception is celebrated with hundreds of VIPs, designers, and friends of Housing Works. A-list design enthusiasts mingle with event chairs and top designers including Charlotte Moss, Miles Redd, Scott Sanders, Neal Beckstedt, and Tyler Wisler. Guests will get a first look at the room vignettes and enjoy exclusive shopping, cocktails, hors d’oeuvres, and live entertainment. Tickets are on sale now at: designonadime2015.eventbrite.com.

Leading up to this year’s Design on a Dime, Housing Works will hold its Third Annual Groundbreaker Awards Dinner at the Metropolitan Pavilion on Wednesday, April 22nd, 2015. Join our host, Barney’s Creative Ambassador-at-Large Simon Doonan, along with the talented cast of HBO’s hit show GIRLS as we celebrate members of our community who have made incredible contributions to our fight against HIV/AIDS and homelessness. Those being honored include:
• Sandra Lee, Multi-Emmy Award-Winning TV Personality & Editor-in-Chief of Sandra Lee
• Charlotte Moss, Interior Designer and Founder of Charlotte Moss LLC
• Sandra Stangl, President, Pottery Barn, Pottery Barn Kids, PBteen
• Jim Druckman, President & CEO of New York Design Center, receiving the inaugural The Heart of Design Award, presented by ELLEDECOR
• And Sharon Simonaire, Interior Designer, with a special video tribute celebrating her beautiful life and her amazing work

Proceeds from Design on a Dime and the Groundbreaker Awards will benefit Housing Works’ newest supportive housing development, the Hull Street Residence. Hull Street is a from-the-ground-up housing development project that will transform a vacant 6,000 sq ft. lot, into a beautiful and safe home for 29 single, formerly homeless adults living with or affected by HIV/AIDS.

Design on a Dime VIP Opening Night Reception
Available at designonadime2015.eventbrite.com

About Housing Works:
Housing Works is a healing community of people living with and affected by HIV/AIDS. Our mission is to end the dual crises of homelessness and AIDS through relentless advocacy, the provision of lifesaving services, and entrepreneurial businesses that sustain our efforts.

For more information, please contact Katherine Oakes at K.Oakes@housingworks.org or 212.966.0466 Ext. 1124. Visit www.housingworks.org/dime for more details on Design on a Dime 2015; for more information on Housing Works visit housingworks.org.

Albany, NY – Hundreds of activists from around New York State representing the End AIDS NY 2020 Coalition rallied at the Capitol today to call for the State to implement recommendations recently delivered to Governor Cuomo by a task force he established last year. More than a dozen state elected officials spoke at the town hall-style event.

Charles King, CEO of Housing Works and Co-Chair of the Governor’s Ending the Epidemic Task Force called for action: “We now have a blueprint that clearly spells out the steps New York State needs to take to bring an end to AIDS as an epidemic,” said King. “We are calling on both houses of the legislature and Governor Cuomo to all do their part to see that the blueprint is fully implemented.”

“From ending homelessness among people living with HIV and at-risk LGBT youth, to making harm reduction services and pre- and post-exposure prophylaxis universally available, to ending discrimination against transgender New Yorkers, ending the criminalization of condoms, and ensuring that everyone with HIV can receive treatment, we’re clear about what needs to happen,” said Jennifer Flynn, Executive Director of VOCAL New York and a member of the Ending the Epidemic Task Force.

New York is home to 154,000 people living with HIV (PLWH). It has been at the epicenter of the HIV/AIDS epidemic from its beginning over three decades ago. After major advances in science on treatment as prevention and the introduction of new prevention tools, the Coalition contends that ending AIDS as an epidemic is both possible and an ethical imperative. The Coalition, composed of many groups that participated in the governor’s Ending the Epidemic Task Force, has put forward a legislative and budget blueprint that would close gaps in HIV prevention, treatment, and supportive services. Ultimately, the blueprint’s goals include eliminating AIDS diagnoses and reducing new infections from more than 3,000 statewide today to less than 750 by 2020.

Senator Brad Hoylman highlighted housing issues as a central theme of the blueprint: “It’s imperative that we enact the commonsense recommendations that Governor Cuomo’s Ending the Epidemic Task Force has developed, including ensuring that all low-income New Yorkers with HIV or AIDS have access to stable housing and other support services needed to keep them healthy and reduce their risk of transmission. Implementing the Task Force’s recommendations would significantly reduce the rate of infections, generate over $5 billion in healthcare savings, and put New York on a path toward once and for all eradicating HIV/AIDS.”

A widely supported recommendation is to expand New York City’s policy of providing housing, nutrition, and transportation assistance to low-income residents living with advanced HIV disease to instead cover all low-income New Yorkers living with HIV statewide. In addition, the amount that public assistance recipients would pay toward their rent would be capped to 30% of their income. Similarly, the Coalition has prioritized expanded shelter beds and permanent housing for homeless LGBT and other youth, populations at especially high risk of HIV infection and progression to AIDS.

“For people living with AIDS in Yonkers, Mt. Vernon, Albany, Buffalo, Rochester, Syracuse, Garden City, Poughkeepsie, the most stable housing is prison or a hospital bed. We need to expand the enhanced rental assistance, food and transportation allowance statewide to all HIV-positive New Yorkers,” said Senator Ruth Hassell-Thompson.

Senator Velmanette Montgomery, who initially proposed the State’s needle exchange program and who currently sponsors a bill to end the use of condoms in criminal proceedings, highlighted the broader role of harm reduction services in ending the HIV epidemic. “For more than 20 years, New York has been a leader in syringe exchange and related harm reduction services, and we’ve made great progress in reducing new HIV infections among people who use drugs,” said Senator Montgomery. “The sad truth, however, is that we still have huge gaps in access to harm reduction services. It’s time for New York to fully support harm reduction, not only to end the HIV epidemic but also to prevent hepatitis C, overdose, and other conditions that have become leading causes of death for people living with HIV.”

“New York State has made tremendous strides in reducing the incidence of HIV and AIDS,” said Assembly Health Committee Chair Richard N. Gottfried. Referring to legislation he recently introduced, Assembly Member Gottfried said that “by fully legalizing syringe possession and strengthening the law for access to clean syringes, and with additional funding for the End to AIDS plan, we can more fully achieve the goal of ending the epidemic in New York State.”

“New York has the medical tools and willpower to establish itself as a leader in the eradication of AIDS. Unfortunately, outdated laws still stand in the way of many getting access to the harm reduction services they need to avoid contracting HIV,” said State Senator Gustavo Rivera, the Senate sponsor of new syringe access legislation. “To be successful, we need to fully implement the plan put forth by the Governor’s Ending the Epidemic Task Force. This includes completely decriminalizing syringe possession so that those who are the most vulnerable to HIV infection are not prevented from protecting their health.”

“As the new Chair of the Alcoholism & Substance Abuse Committee, I will continue my work with advocates and my colleagues in government to help eradicate some of the root causes of HIV and AIDS, including barriers to syringe access and treatment for people who use drugs,” said Assembly Member Linda B. Rosenthal. “The need is great for more education, outreach and supportive services to attain our shared goal of reducing the number of new infections in New York.”

Guillermo Chacon, President of the Latino Commission on AIDS, described the enduring impact of racial and social inequality on HIV rates among people of color: “HIV incidence among Latinos is not the result of high risk behavior alone, but of structural inequalities that make Latinos more likely to come into contact with the disease and less likely to access prevention, treatment, and care. These inequities demonstrate that isolation, poverty, disregard, stigma, disconnect from services, and disempowerment have a much larger impact than behavior alone. Finding means to provide stable housing, and eliminating barriers to treatment, prevention, and care are essential to ending the AIDS epidemic by 2020 in New York State.”

Summing up the mood of the event, Assembly Member Deborah J. Glick said that “elimination of HIV/AIDS is an important goal and I appreciate that the Governor has raised his level of commitment in this regard. In too many places, young people believe that it is a manageable illness. Unfortunately, it is still a dreadful disease which can manifest in many ways and undermines a person’s entire life. The stigma is not gone and too often young people are in denial. Therefore it is crucial to keep the focus on eliminating this disease.”

HIV/AIDS Advocates Encouraged by Progress on Cuomo Plan to End AIDS in NY by 2020 & Rally to Make That Plan a Reality

Albany, NY—On Thursday, February 26th, leaders of the HIV/AIDS community, advocates, and other allies will hold a press conference and rally in the War Room of the State Capitol Building in Albany, New York. We commend the Governor for a historic year as New York enters its fourth decade in the fight against AIDS, and will be holding a rally to underscore what actions are needed to fully implement the Governor’s state plan to end AIDS as an epidemic by 2020.

In June 2014, the Governor announced a three-point Ending the Epidemic plan to bring new annual HIV infections from approximately 3,200 in 2013 to below 750 by 2020. On October 14, 2014, the Governor convened a Task Force of 63 experts and community leaders to advance recommendations on how to make the plan a reality and achieve an end of the AIDS epidemic in NYS. On February 20, 2015, the Governor showed further commitment toward a comprehensive approach to ending the epidemic by adding funding into his 30-Day Budget Amendments for this year. We encourage him and the Legislature to build on this solid foundation and seize this unique moment to position New York as a visionary model for action in ending AIDS nationally and globally.

The Ending the Epidemic Task Force has now created a Blueprint that, if fully enacted, will reduce new HIV infections to zero by 2020 and improve treatment outcomes for HIV-positive New Yorkers. To be the first to end AIDS, New York must double the number of people with HIV who receive ongoing antiretroviral therapy, which keeps them healthy and unable to transmit HIV to others. The Blueprint also include aggressive but essential recommendations geared to reaching at-risk populations that are disproportionately affected by HIV: expanding housing and transportation services for low-income people with HIV; reforming laws to expand access to syringes and condoms; expanding access to HIV prevention tools like pre- and post-exposure prophylaxis (PEP and PrEP); and ensuring that minors are able to consent to prevention and treatment. Above all, achieving the ambitious but reachable goal to end AIDS in New York will require a steadfast, ongoing commitment by both the Governor and the legislature to translate ideas into action by embracing the Blueprint and providing the resources necessary for implementation.

A task force set up by Governor Andrew Cuomo to recommend ways the state can eliminate AIDS as an epidemic in New York within five years is hoping it can convince the governor and the Legislature to go even further.

The task force is planning a series of recommendations that its members say will reduce the number of new infections statewide almost to zero, while ending the stigma that goes along with the disease.

Cuomo announced in June 2014 that he would seek to end AIDS as an epidemic statewide, reducing the number of new H.I.V./AIDS infections each year below the number of annual deaths from the disease.

That plan would mean the state’s new infection rate would have to drop from about 3,000 new cases each year to roughly 750.

After Cuomo announced the plan last summer, he said he would empanel a task force to develop a blueprint for how the goal could be achieved within five years. That panel is scheduled to deliver a final report sometime over the coming weeks.

But while advocates say that everyone agrees an end to AIDS is a worthwhile achievement, some of the ideas contained in the yet-to-be-released report from the task force may be a hard sell in Albany, where new dollars for health initiatives can be scarce.

And the task force, made up of 63 different people representing all areas of the state, is trying to go beyond its mandate, not just reducing the number of new infections below the threshold necessary to qualify as an epidemic, but virtually eradicating the disease, as well as the stigma that goes along with it.

That is easier said than done, said Charles King, the president and C.E.O. of Housing Works and a co-chair of the Ending AIDS task force.

One of the central pieces of the report the task force will release in the coming weeks is a call to pass GENDA, the Gender Expression Non-Discrimination Act. This bill, which would prohibit discrimination against transgender New Yorkers, has passed multiple times in the state Assembly, but has yet to be brought for a vote in the Republican-held State Senate.

Transgender New Yorkers, along with poor, young Latinos and black men who have sex with other men, are among the populations most at risk for contracting H.I.V. and AIDS, King said. Infection rates among all other populations of New Yorkers have been steadily decreasing over at least the past two decades. In 1993, 15,000 New Yorkers were infected with HIV each year, and by 2013, the number of new annual infections had decreased to 3,200. The introduction of drugs like Truvada, the pre-exposure prophylactic drug that can be taken to ward off infection, is expected to help curb new infection rates. But new infection rates have held steady among black and Latino men who have sex with men and transgender people.

“We’ve seen the curve of new infections go down among every population, with the exception of younger black and Hispanic gay and bisexual men, where it’s still continuing at more or less the same rate of new infections as before,” King said. “We also know there’s a huge issue among transgender people, we just don’t have the data.”

Passing GENDA would help transgender people feel more comfortable disclosing their sexual practices, and seeking health care, King said.

“For transgender folk you’ve got to have an enabling environment, and if it’s still legal to discriminate against transgender people, it’s very hard to create an environment that’s good for them to avoid infection,” King said.

Ending the epidemic would be much more difficult without GENDA, said Kimberleigh Smith, the vice president of policy advocacy and communications at Harlem United, a nonprofit human service organization providing community based health care and supportive housing.

“I’m sure we can get closer without GENDA, but I think passing GENDA is a big part of these recommendations,” Smith said.

Two other task force recommendations affect teenage sexual practices, a political landmine in Albany, especially among more conservative lawmakers loath to appear to be condoning permissive sexual behavior.

A bill called the Healthy Teens Act would “require every school across the state, every high school and middle school to teach age-appropriate public health informed sexuality courses,” King said.

As of now, the state does mandate every public school provide comprehensive sex education, and decisions on what to teach are made at the district level.

Education about lesbian, gay bisexual and transgender sexual practices is key to helping young people at risk of infection understand how to avoid the disease, King said. And some of the state’s most at-risk populations in school have no sexual education. High schools for nontraditional students, over the age of 18, aren’t required to provide sexual education classes, and neither are schools for developmentally disabled students.

Another policy change would allow minors, who are already allowed to consent to H.I.V. testing, to consent to receiving treatment or one of the new prophylactic drug regimens if they become infected.

The most difficult proposal to pass among the task force’s recommendations might be a new measure that would provide housing support for homeless and unstably housed H.I.V./AIDS patients outside of New York City. Health officials have long noted the correlation between how stable a person’s housing is and their ability to adhere to a drug treatment regimen. But providing housing for the estimated 4,000 to 6,000 New Yorkers outside of New York City who are H.I.V. infected would cost the state an estimated $100 to $120 million a year, said Mark Harrington executive director of Treatment Action Group (TAG).

The AIDS advocates know that anything costly or controversial can be a hard sell in Albany, especially while the Legislature is preoccupied with ethics reforms and looming fights over education and rent regulations. But the task force members say they are encouraged by the governor’s public commitment to the idea of being the first state in the country to end its epidemic, a move being closely watched by other states like Washington and Minnesota, where similar plans to lower new AIDS infections have recently been announced.

Cuomo endorsed GENDA in his written budget book this year, the first time he has done so, advocates noted.

“I think [Cuomo]’s being looked at, as is New York State across the country, as really at the forefront of this,” said Kimberleigh Smith, of Harlem United.

The Cuomo administration released amendments to the state budget last week that added an additional $5 million of funding for AIDS treatment programs, on top of money already committed in the original budget.

“What we really want more than anything is we want the governor’s face, on TV, in a room announcing that he’s endorsing this and he’s doing this,” Harrington said. “Because yeah, he said it, but people’s attention spans are very short and you know, we want this to be a personal initiative of his.”

Housing Works, which has often rallied and fought for budget initiatives through protest action in New York City and Albany, is closer to the levers of power on the ending AIDS initiative than it has been on other issues in recent memory. King was named by Cuomo as the task force’s co-chair, and Housing Works retained Metropolitan Public Strategies, the consulting firm headed by Neal Kwatra, which was also involved in Cuomo’s re-election campaign, to provide help with their efforts to rally support for the task force recommendations in Albany.

The task force members said reluctant lawmakers might be persuaded by the economic arguments of a possible end to AIDS in New York.

“Other than appealing to their basic underlying humanity … beyond that, let’s say we prevent 10,000 new infections in the next five years and the lifetime cost of care for an H.I.V. infected person is about $388,000 dollars,” Harrington said. “Overall we’ll save the state over $4 billion dollars by averting those 10,000 infections.”

The task force estimated the state would save a total of $5.1 billion by 2020 in averted housing costs and combined savings from not having to treat newly infected patients.

“It’s pretty hard not to look at those numbers and think that that’s a pretty substantial gain to the state taxpayers, not to mention all the lives that you’ve saved,” Harrington said.

King said the advocates understood the biggest pressure on reluctant lawmakers could be the governor, who can be remarkably persuasive for the right cause.

“It’s more a question of, is the governor, who has very complicated and weighty issues on his plate—he wants to get ethics reform through, he’s driving a school agenda that he wants to get through, you know—in the middle of driving all those things, is he going to be willing to put the political capital behind issues like transgender rights, like sex ed in the schools and children having the right to consent?” King asked.

“It’s a question of bandwidth, and it’s a question of investing political capital. And so I’m hopeful that the governor with a lot of encouragement from activists and from the task force is going to do the right thing on all of these things, but I think it’s really incumbent that we continue to encourage him,” King said.

The goal of ending the epidemic seemed remarkably within reach, Harrington noted.

“Having worked with New Yorkers fighting AIDS for the last 35 years, this is one of the most exciting periods in our work together because we’re finally beginning to see the pieces come together for an endgame. And if we can do it here, we can try to scale it and adapt it to any other part of the world,” he said. “Going from something that was once considered to be a universal death sentence and people didn’t even want to talk about it to thinking about the endgame, it’s a really exciting period to be doing this work in. We’re really hoping the governor is going to help us cross the finish line.”

Housing Works Applauds Governor Cuomo’s 2015 Opportunity Agenda

NEWYORK, NY – SUNDAY, JANUARY 18, 2015. Housing Works is thrilled to endorse Governor Andrew M. Cuomo’s 2015 Opportunity Agenda—the Anti-Poverty Opportunity Agenda, a 10-point plan to combat poverty and fight inequality, which includes more than $486 million in new funding for affordable and supportive housing. This plan will include at least 5,000 new units of supportive housing for people with various chronic conditions around New York State. Also included in the Opportunity Agenda are significant new investments in subsidies for employment of youth of color and well as a new investment in anti-hunger efforts.

Housing Works President and CEO Charles King has been chairing the Ending the Epidemic Task Force, which intends to deliver a blueprint within the next two weeks to meet the Governor’s goal of ending AIDS as an epidemic in New York State by 2020. As the Governor affirmed in his inaugural address, he intends to make New York State the first jurisdiction in the United States to end the AIDS epidemic. Although the Opportunity Agenda initiatives announced today were not specifically targeted at people living with HIV and AIDS or those at risk, they address some of the concrete recommendations being made by the Ending the Epidemic Task Force, including housing for people living with HIV and those most at risk of infection, employment opportunities for youth at risk as well as those living with the virus, and food security, which are essential for people to stay adherent to anti-retroviral treatment.

Said King, “We are excited by these initiatives and look forward to additional initiatives directly aimed at ending the AIDS epidemic once the Governor has had an opportunity to review our blueprint and recommendations. We are excited by the leadership this governor has shown, investing in peoples’ lives not only because that is the right thing to do morally but because it is the smart thing to do for the future of all New Yorkers.”

Housing Works is one of New York State’s largest providers of health care, housing, employment opportunities, and other vital services for homeless people living with HIV and other chronic conditions.

FORIMMEDIATERELEASE

Tuesday, January 13, 2015

Governor Cuomo’s Ending the Epidemic Task Force Completes Plan to End AIDS in NY State by 2020

Activists, service providers, public health professionals hail governor’s leadership, call on legislators and local governments to join forces to end the epidemic

ALBANY, NY – JANUARY 13, 2015. Today the Ending the Epidemic Task Force, convened by the New York State Department of Health (DOH) at the behest of Governor Andrew M. Cuomo, completed its comprehensive, rigorous, and unprecedented Plan to End AIDS in New York State by 2020.

Charles King, CEO of Housing Works, who co-chaired the task force with Gus Birkhead of the DOH’s AIDS Institute, stated, “Governor Andrew Cuomo, working with the community, the task force, and the New York City and State health departments, has created a visionary package that, if implemented, has the potential to end the AIDS epidemic in the state by 2020. Ending New York’s epidemic means reducing new HIV infections from over 3,000 last year to under 750 in 2020 and ending HIV-related deaths. Reaching these goals will require dramatic scale-up of high-quality combination HIV prevention, including pre-exposure prophylaxis (PrEP), universal health coverage and primary care, scaled-up HIV testing, and full uptake of HIV treatment, to enable at least 85 percent of HIV-positive New Yorkers to achieve and sustain optimal health through an undetectable viral load.”

Mark Harrington, executive director of Treatment Action Group (TAG), who co-chaired the task force’s Data Committee, stated, “The governor has allowed the task force to work in freedom. We were never muzzled or told not to include something. The governor has already taken steps we were planning on recommending, such as requiring Medicaid and private insurance coverage for transgender health care. Now it will be up to the state legislature and local leaders to provide the support and necessary resources to achieve the vision laid out by Governor Cuomo and the task force.”

Perry Junjulas, executive director of the Albany and Schenectady Damien Centers, who co-chaired the task force’s Housing and Supportive Services Committee, said, “A key part of the Plan is to broaden essential HIV-related services—safe housing, transportation, and food—to all low-income, HIV-positive New Yorkers, including the 30 percent affordable housing protection jointly enacted last year for New York City by Governor Cuomo and Mayor de Blasio. Our proposal also includes increasing the eligibility for these services for low-income, HIV-positive persons in the City. Extending these needed supports statewide will require new resources and legislative actions, but mobilizing now will save lives and money down the road and play a crucial role in ending the epidemic.”

Made up of over 70 activists, health service providers, researchers, and public health professionals from around the state, the task force met intensively over the past four months, carefully reviewing over 300 recommendations to craft its comprehensive recommendations to the governor, the state legislature, state agencies, county and city governments, as well as health providers, the private sector, and community-based organizations.

Harlem United vice president for policy and advocacy and task force member Kimberleigh J. Smith, said, “The task force has been a great model for using the best of what we know to create a comprehensive plan of action to end AIDS. New approaches to HIV prevention—like PrEP—were elevated from the outset. We’re excited to deliver a plan to create greater access to, and awareness of, PrEP—with bolstered education and outreach; initiatives to deliver PrEP to women, transgender individuals, young people, and gay men of color; and a state drug assistance program that will defray the cost of care. But the plan doesn’t stop there. It puts forth progressive prevention interventions that acknowledge the realities of people’s lives and the structural drivers of HIV, such as unstable housing, stigma, lack of jobs and economic insecurity.”

Task force member Reverend Moon Hawk River Stone, an internationally recognized expert in transgender care, stated, “What really excited me was seeing people from all around the state work together across community, professional, or identity lines to create a truly integrated HIV/AIDS plan to meet the needs of all communities.” Stone, who lives in Schenectady, is working to spur integration of the Plan into its local government programs. “But we need state legislative support,” Stone said. “For example, while we all hail Governor Cuomo’s leadership in transgender health, the state needs to pass the Gender Expression Non-Discrimination Act, or GENDA, to bring an end to stigma and discrimination experienced by this population, which has among the highest rates of HIV infection.”

Jim Eigo of ACT UP/New York, a member of the task force’s Prevention Committee, said, “The state, the City, and the HIV community have effectively developed the first plan anywhere to bring the AIDS epidemic to a close. We will not achieve success until every New Yorker has the tools, health care access, information, coverage, and social support services needed to stay HIV-negative or, if already HIV-positive, to stay healthy and unable to further transmit HIV to others. The real work begins now, turning this vision into a reality, community by community.”

As Governor Cuomo reaffirmed in his inaugural address on January 1, 2015: “We set a national standard and committed this state to be the first state in the nation to end the AIDS epidemic in the next decade, and we’re going to do it.”

“We look forward to working with the governor, the state legislature, Mayor de Blasio, the state and local health departments, health and service providers, researchers, the private sector, and the community over the coming six years to end the epidemic,” said Housing Works’ King. “With the momentum, expertise, and commitment built up in this state over the past 33 years of the AIDS pandemic, and the intensive activism and partnership among all stakeholders over this last year, we can move forward together into the epidemic endgame.”

FORIMMEDIATERELEASE

Wednesday, December 17, 2014

The Housing Works community commends yesterday’s announcement by the Office of New York Governor Andrew Cuomo and the New York State Department of Health that moving forward, Medicaid programs will now cover transgender healthcare, including hormone therapy and gender realignment surgery. Previous regulations dating back to the late 1990s prevented access to hormones and all forms of gender realignment surgery—in essence to the most commonly sought types of trans-specific healthcare.

This new proposed policy represents decades of persistent organizing work by the transgender community and its staunch advocates. When the regulation reached an impasse during the Patterson Administration, advocacy allies at the Sylvia Rivera Law Project, Housing Works, and the Empire State Pride Agenda partnered to create a petitioning campaign that kept the pressure on and later brought the campaign to Governor Cuomo and his Medicaid Resign Team.

This news marks the third in a series of recent, small but crucial victories for the rights of transgender New Yorkers during the past few weeks. Last week, Governor Cuomo announced a directive requiring health insurance companies to cover necessary gender-affirming treatment for transgender patients, including coverage for gender realignment surgery, hormone therapy, and other transition treatments. Previously, these treatments and procedures were frequently denied at the discretion of the insurance companies, and consequently, transgender individuals who wanted to pursue those options had to either pay tens of thousands of dollars out of pocket or to postpone those plans due to the affordability issue. And two weeks ago, the New York City Council announced the removal of the surgery requirement for birth-certificate changes, a critical update to its long-standing antiquated birth-certificate policy that will make it easier for NYC transgender residents to change the gender marker on their birth certificates to match their gender identities. The NYC update mirrors a comparable policy shift made at the state level last June. Collectively, these policies represent a great first step toward equal rights for the 58,000+ New Yorkers who identify as transgender.

With yesterday’s announcement of the new Medicaid coverage, New York finally joins the five other U.S. jurisdictions that currently provide these service—California, Massachusetts, Oregon, Vermont, and the District of Columbia—as well as the federal government’s declaration this past May of comparable coverage for Medicare recipients. While this welcome change is a sign of progress, the proposed rule has its flaws, and there is still much lacking from the new regulation.

The new regulation would provide coverage for hormone therapy for anyone 18 years of age or older and surgery resulting in sterilization for those over 21, providing they meet certain requirements:

that an individual be diagnosed with gender dysphoria and receive treatment for that diagnosis, and

that two medical providers assess the individual and recommend them for treatment.

The proposal also includes a long list of excluded services and procedures.

Transgender youth under the age of 18 who receive Medicaid would also not be covered. Surgery exclusions for youth between 18 and 21 years of age could prove to be problematic, and the exhaustive list of excluded services and procedures should be reexamined. (The full regulation can be downloaded at the bottom of this post or linked to here.)

Housing Works President and CEO Charles King praised the announcement while simultaneously calling for cautious optimism and the need to push for additional next steps in the fight for equal rights for all trans New Yorkers. “Even with all its omissions and limitations,” King said, “this new policy reflects a giant leap forward in providing quality healthcare services for New York’s transgender community. That said, it also brings into sharper relief what transgender New Yorkers are currently lacking, which is basic civil rights. Without passage of the Gender Expression Non-Discrimination Act (GENDA), a bill that would add gender identity or expression to the NY Human Rights Law, transgender individuals will still face discrimination each day in such base-level essential areas of life as housing and employment. If a transgender person in New York doesn’t have a home to sleep in each night, it will be difficult for that individual to focus on receiving the medical care this regulation now makes available to trans folk, or even to access healthcare in the first place. Transgender individuals are 50 times more likely to contract HIV than someone who isn’t trans-identified. HIV/AIDS and homelessness disproportionately impact the transgender community and an end to these dual crises will not be manageable without civil rights protections granted for this community.”

GENDA bill sponsors Assembly Member Richard Gottfried and Senator Daniel Squadron have worked tirelessly to champion this legislation and while it has passed in the Assembly for the previous six years, there has yet to be a vote in the Senate.

The Cuomo Administration’s efforts of the past year around the birth certificate hurdles, private insurance and now Medicaid are tremendous victories for transgender equality in New York State. Now New York must pass GENDA to ensure that every transgender New Yorker has access to employment and housing as well.

FORIMMEDIATERELEASE

Monday, December 1, 2014

Housing Works CEO King Receives NYSDOH World AIDS Day Special Recognition Award

Albany, NY—On Monday, December 1, World AIDS Day, a gathering of partners was convened in Albany at the Empire State Plaza Convention Hall by the NY State Department of Health, including Housing Works, BOOM!Health, Harm Reduction Coalition, and other service organizations.

The two-day event began on Monday, December 1 (World AIDS Day) with morning sessions on prevention education and PrEP, as well as an Ending the Epidemic (ETE) media kickoff that included brief speeches by members of the NY State Department of Health and the Ending the Epidemic Task Force, including Housing Works CEO and ETE Task Force community co-chair Charles King.

Later that afternoon, Acting State Health Commissioner presided over a session called “Recognizing HIV Heroes/Sheroes,” during which he presented the World AIDS Day 2014 Commissioner’s Special Recognition Awards, which recognize individuals committed to reducing new HIV infections among New Yorkers, thus contributing to the state’s plan to being the AIDS epidemic to an end by the year 2020. Among the awardees was Housing Works President & CEO Charles King.

Upon receiving his award, King made the following remarks:

“When I first learned that I was to be honored along with my wonderful colleagues here today with the Commissioner’s award, my response was, ‘It’s too early for something like this. We haven’t done anything yet.’

“To be sure, Mark Harrington, Ginny Shubert, Dan Tietz, Kimberleigh Smith, and a number of other people have spent much of the least two years working in an incredible partnership, which includes folk like Dan O’Connell, Johanne Morne, Ira Feldman, Courtney Burke, and so many more. That partnership has brought us to the real possibility of achieving an end to the AIDS epidemic here in our state. But we still have a blueprint to deliver, and we still need to see it faithfully executed with consistency and commitment over the next several years if we are to accomplish that goal.

“But Sunday a week ago, I held the hand of an elderly man I have now known for 26 years, as he lay dying. When I met Sterling Smith, he was homeless and living in an abandoned building, where he injected both heroin and cocaine multiple times a day. We litigated to get him an AIDS diagnosis and then worked to get him housed. We housed and then evicted Sterling over a dozen times before he moved into Stand Up Harlem several years ago. Something about the size of the building, the individual attention he received, and maybe just the aging process worked. He lived there with us for seven years, and stayed virally suppressed. When his third bout of cancer became too advanced to treat, he embraced hospice care with one condition, that he die in his own apartment in his own bed.

“To me, that is at least part of what the end of AIDS means. Not that we have eliminated the virus, which I am sure will happen some day, but that we have stopped new infections in every population, and that those of us who are living with HIV can live under our own vine and fig tree, that we may enjoy the fruits of our own labor, and that, when that time comes, we may die in our own home and in our own bed.

“It is in this spirit, that I accept this award in the memory and honor of my friend and mentor, Sterling Smith.”

PRESSRELEASE

We can end AIDS by 2020

Community leaders, people living with HIV & AIDS, celebrities, and elected and city officials gathered together to speak at Harlem’s World Famous Apollo Theater

New York, NY—Today, Monday, December 1 (World AIDS Day), the New York City World AIDS Day Coalition, consisting of over 40 AIDS-service and community-based organizations, medical providers, the NYC Council Speaker’s Office, and the NYC Department of Health and Mental Hygiene hosted a community launch of the Governor’s Ending the Epidemic Campaign, a state plan to end AIDS in New York by the year 2020. The launch took place at Harlem’s World Famous Apollo Theater and provided an opportunity for the general public to learn more about the campaign and how New Yorkers can help.

The launch featured Mayor Bill de Blasio, City Council Speaker Melissa Mark-Viverito, Public Advocate Letitia James, Comptroller Scott Stringer, Senators Brad Hoylman, Daniel Squadron, and Gustavo Rivera; Assembly Members Richard Gottfried and Daniel O’Donnell; Council Members Corey Johnson, Danny Dromm, and Annabel Palma; Health Commissioner Mary Bassett and Assistant Commissioner Demetre Daskalakis and community leaders, people living with HIV & AIDS, and celebrities.

New York City Mayor de Blasio said, “We’re going to make it easier than ever for people who never got tested to have that chance. We want this to be something that people know is there for them.… Because if you don’t know, you can’t get the help you deserve. Our job is to help everyone know that they can get the help, but first they have to a step and learn what their own reality is so we can all be there for them.” De Blasio remarks emphasized the role stigma continues to play in promoting the spread of the HIV virus, and he noted that a major part of the work at hand—for both the city and community service organizations working with HIV-positive individuals as well those affected by HIV and AIDS—to get to an end to AIDS in New York by 2020 will necessitate helping people overcome fear, which is a huge obstacle to universal HIV testing across all populations, especially among at-risk groups. “You know what? There is often a lot of fear about the HIV test, let’s face it. There’s been a sense of pause repeatedly when you think of the notion of getting tested, a reluctance,” de Blasio observed. “The only HIV test to fear is the one you don’t take. Because if you don’t know, you never get the help you deserve.”

“After a long history of struggling with one of the worst AIDS epidemic in the country, New York now has the medical tools and willpower to establish itself as a leader in the eradication of this disease,” said State Senator Gustavo Rivera. “We need to work together to implement the necessary policies that will help prevent new infections and improve the quality of life of those afflicted by the disease. I commend the NYC World AIDS Coalition for coming together to celebrate how far we have come and to lay out a comprehensive plan to end AIDS in our State as an epidemic by 2020.”

“World AIDS Day is a call to action in the campaign against HIV/AIDS,” said Assembly Member & Health Committee Chair Richard N. Gottfried. “New York has the tools to stop the spread of AIDS and we’ve made tremendous progress. New York is reshaping healthcare delivery, and recognizing the importance of supportive housing and affordable housing. We need truly universal health coverage that works for every New Yorker if we’re going to win this fight.”

NY State Senator Brad Hoylman, who is a member of the Public Officials Advisory Committee to the Governor’s Task Force on Ending the Epidemic, said, “As we come together once again to commemorate World AIDS Day, we reflect upon those we have lost while standing with those who are still fighting this insidious disease. This year’s commemoration, however, carries with it an unprecedented energy and hopefulness. As unbelievable as it may have seemed even a decade ago, the end of the AIDS epidemic is within our reach, and I commend Governor Cuomo, Mayor de Blasio, VOCAL NY and the many organizations and elected officials gathered here for their commitment to achieving that extraordinary goal.” Senator Hoylman introduced one of the most significant demands of the event—a campaign to expand enhanced rental assistance to all HIV+ New Yorkers.

The event took place at Harlem’s World Famous Apollo Theater, 253 W. 125th Street between Frederick Douglass & Adam Clayton Powell Jr. Blvd. from 10-noon.

On October 14, Governor Andrew M. Cuomo announced members of a Task Force that will work to implement the plan to end the AIDS epidemic in New York. The Ending the Epidemic Task Force—whose work will be supplemented by two advisory groups in the near future—will support the effort to reduce the number of new HIV infections to 750 per year by 2020. Together, all three groups will consist of experts and community advocates from across New York and will perform public outreach and awareness campaigns in line with the Governor’s plan.

The end of the AIDS epidemic in New York will occur when the total number of new HIV infections has fallen below the number of HIV-related deaths. In June, Governor Cuomo announced a three-point plan to decrease new HIV infections to the point where the number of people living with HIV in New York State is reduced for the first time by:

1. Identifying people with HIV who remain undiagnosed and linking them to health care;

2.Linking and retaining people diagnosed with HIV to health care and getting them on anti-HIV therapy to maximize HIV virus suppression so they remain healthy and prevent further transmission; and

3.Providing access to Pre-Exposure Prophylaxis (PrEP) for high-risk people to keep them HIV negative.

On stage, the speakers, many of whom were living with AIDS, identified the importance of creating bold new initiatives such as expanding enhanced rental assistance to all HIV+ New Yorkers so that they can gain access to housing instead of remaining homeless and to create a new insurance program to cover the cost of Post-Exposure Prophylaxis treatment.

New York State’s only openly HIV+ elected official, Council Member Corey Johnson, said, “We now know that we can end the AIDS epidemic in NYS. It is a real and achievable goal, but only if we make sure that all HIV+ New Yorkers have access to a real rental assistance program that will make the difference between homelessness and stable housing. That’s what we provide for NYC residents living with AIDS, but to end the epidemic we need to make sure this program gets expanded to all NYers living with HIV statewide. I am committed to getting this done in NYC and as a member of the Governor’s Ending the Epidemic Public Officials Advisory Committee, I will work to make sure that this gets done statewide.”

NYC Council Speaker Melissa Mark-Viverito said, “HIV/AIDS is intrinsically linked to longstanding issues of social injustice. To end the epidemic we need social justice! We must combat homelessness, poverty, transphobia, homophobia, and racism. She also noted the importance of supporting programs and legislation that works when it comes to combatting the spread of HIV, even those that are sometimes associated with controversy, stigma, and underlying judgment, such as syringe exchange programs. “I support syringe exchange programs,” Mark-Viverito said. “I think we should be doing more of that.”

“The 2014 theme for World AIDS Day is ‘focus, partner, achieve: an AIDS-free generation.’ As the Public Advocate for the City in New York, I am committed to achieving an AIDS-free generation. We can no longer maintain the status quo. New York City has always been on the forefront of ending AIDS and we must continue these efforts. The key going forward is getting people tested and ensuring those who test positive are engaged in the proper care to suppress the virus and offering affordable and easily accessible preventative drugs for those who test negative. By focusing and partnering as a united front, we will end the epidemic, so let’s get to work today and break the status quo,” said Letitia James, Public Advocate for the City of New York.

Wanda Hernandez, Board Chair of VOCAL-NY, Peer Educator at BOOM! Health, and a member of the NYCHASA Advisory Committee introduced the Mayor, thanking him for saving her from eviction when he and Governor Cuomo reached an agreement to cap the amount of rent money that people living with AIDS spend to 30% of their income.

People living with HIV/AIDS and members of the Governor’s Ending the Epidemic Task Force are available for interviews by calling or emailing Mika De Roo, Housing Works, at # 347-585-6051 or m.deroo@housingworks.org.

FORIMMEDIATERELEASE

Monday, December 1, 2014

Housing Works CEO Charles King Speaks at NYSDOH Ending the Epidemic Kickoff in Albany on World AIDS Day

Albany, NY—As the NYC World AIDS Day Coalition came together at Harlem’s World Famous Apollo Theater for its own community launch of the End AIDS NY 2020 campaign, a concurrent World AIDS Day gathering of partners was convened at the Empire State Plaza Convention Hall by the NY State Department of Health, including Housing Works, BOOM!Health, Harm Reduction Coalition, and other service organizations, took place in Albany.

The two-day event began on Monday morning of December 1 (World AIDS Day) with a session on prevention education followed by an Ending the Epidemic media kickoff that included brief speeches by members of the NY State Department of Health and the Ending the Epidemic Task Force.

Below are the full remarks made by Task Force co-chair and Housing Works President & CEO Charles King on the importance of community mobilization in this initiative:

I have never been so proud of New York as I was on June 29th of this year, when Governor Cuomo announced his declaration to end AIDS as an epidemic in our State by 2020. For so many years, New York was the epicenter of the epidemic in our country. And in that dreadful first decade of the epidemic, thousands of our fellow New Yorkers died, both without hope, and believing that their government did not care about their fate. But now, not only does New York have one of the finest systems of care for people living with HIV, our governor has publicly committed us to be the first jurisdiction in the United States to end AIDS as an epidemic!

This commitment would not have been possible without a tremendous amount of collective advocacy and collaboration on the part of the AIDS community and committed public servants within the AIDS Institute, the rest of the New York State Department of Health, and those of New York City, particularly the Department of Health and Mental Hygiene and the Human Resources Administration. Most recently, this has taken the form of the Ending the Epidemic Task Force, with more than 60 members, appointed by the Governor to develop a blueprint for accomplishing this goal.

As the community co-chair of the Ending the Epidemic Task Force, I have been honored to attend some 17 listening sessions over the course of the last four weeks, listening to advocates, clinicians, service providers, people living with HIV, and other stakeholders as they have shared the many obstacles they face as well as their hopes and dreams for an end to this plague.

Many people noted serious and persistent gaps in our system of prevention, services and care, which we absolutely must fill in order to achieve our objective. These include the unacceptably and disproportionately high rate of new infections among young Black and Latino men who have sex with other men, and particularly among transgender folk, along with the lack of access to transgender health care and even basic civil rights in many parts of our state. Many also spoke of the need for housing and transportation for people who are already living with the virus as well as for homeless youth who are at greatest risk. Others have offered innovative ideas for scaling up pre-exposure prophylaxis, finding people who are positive but unaware of their status, and helping people achieve and sustain viral suppression.

As a Task Force, we have received and are deliberating some 297 formal recommendations along with a score of other submissions sent from around the state. With all of these wonderful ideas, and lots of great minds committed to harness the very best of them, I am confident we are going to deliver a blueprint to Commissioner Zucker and Governor Cuomo this January for achieving the objective of ending the AIDS epidemic by 2020.

I am equally confident that the Governor and our State legislature will work together with the impacted executive agencies to implement the vast majority of the recommendations included in that blueprint, so that we can put an end to the suffering that this virus has caused in our state. If we achieve that, we will be showing the way for the rest of our nation and giving hope to the rest of the world. Surely reaching the end is the heartfelt hope that we share on this World AIDS Day.

MEDIAADVISORY

We can end AIDS by 2020

NYC World AIDS Day Coalition to Host Launch of the End AIDS NY 2020 Campaign

Community leaders, people living with HIV & AIDS, celebrities, and elected and city officials to speak at Harlem’s World Famous Apollo Theater

New York, NY—On Monday, December 1 (World AIDS Day), the New York City World AIDS Day Coalition, consisting of over 40 AIDS-service and community-based organizations, medical providers, the NYC Council Speaker’s Office, and the NYC Department of Health and Mental Hygiene will host a community launch of the Governor’s Ending the Epidemic Campaign, a state plan to end AIDS in New York by the year 2020. The launch will take place at Harlem’s World Famous Apollo Theater and provide an opportunity for the general public to learn more about the campaign and how New Yorkers can help.

Because We Can End AIDS in NY by 2020—On October 14, Governor Andrew M. Cuomo announced members of a Task Force that will work to implement the plan to end the AIDS epidemic in New York. The Ending the Epidemic Task Force—whose work will be supplemented by two advisory groups in the near future—will support the effort to reduce the number of new HIV infections to 750 per year by 2020. Together, all three groups will consist of experts and community advocates from across New York and will perform public outreach and awareness campaigns in line with the Governor’s plan.

The three key groups charged with ending the epidemic are:

1. A Task Force, which has been established in support of Governor Cuomo’s three-point plan and will develop and issue recommendations as well as draft New York’s blueprint to end the epidemic. Four subcommittees will focus specifically on prevention, care, data, and housing and supportive services;

2. The Public Official Advisory Group, which will be made up of state and local public officials with significant interest and experience in HIV and AIDS who will be given the opportunity to provide feedback to the task force; and

3. The Public Awareness Ambassadors will be active LGBT and AIDS awareness advocates that will help raise awareness, promote the Governor’s plan, and reduce the stigma associated with HIV/AIDS.

The end of the AIDS epidemic in New York will occur when the total number of new HIV infections has fallen below the number of HIV-related deaths. In June, Governor Cuomo announced a three-point plan to decrease new HIV infections to the point where the number of people living with HIV in New York State is reduced for the first time by:

1. Identifying people with HIV who remain undiagnosed and linking them to health care;

2. Linking and retaining people diagnosed with HIV to health care and getting them on anti-HIV therapy to maximize HIV virus suppression so they remain healthy and prevent further transmission; and

3. Providing access to Pre-Exposure Prophylaxis (PrEP) for high-risk people to keep them HIV negative.

RSVP:

Please RSVP before or on November 30 with one of the press contacts listed above. Photos and interviews are available at 9:30 am at the step-and-repeat area. At 10:00 am, photos and filming can also take place while the speaking program is in progress.

FORIMMEDIATERELEASE

People Living with Hepatitis C, Healthcare Providers, and Advocates Demand Medicaid Coverage for New Treatment Medications

NYS Medicaid placing arbitrary restrictions on hepatitis C treatment, denying the cure to thousands of low income New Yorkers.

More than 200,000 New Yorkers are living with chronic hepatitis C, which causes serious liver disease, including cirrhosis and liver cancer. New medications can cure the disease in as little as 8 weeks.

Albany, NY—Today dozens of people living with hepatitis C (HCV), healthcare providers, and advocates rallied outside of a New York State Department of Health meeting where the state discussed imposing onerous restrictions on how newly approved HCV treatments will be covered by Medicaid. More than 200,000 New Yorkers have chronic HCV, which causes serious liver disease including cirrhosis and liver cancer.

At issue is the breathtaking price that Gilead, which produces two new HCV medications, has set for them: $95,000 for a single 12 week course of treatment in the case of its newest medication, Harvoni. Advocates at once criticized the company for profiteering, noting that the cost of production is in the low hundreds of dollars, and New York Medicaid for excluding thousands of sick patients. Advocates are calling on the state to press negotiations with the pharmaceutical industry to reduce prices while making it easier for patients to benefit from the new drugs.

“Now that we can cure Hepatitis C, we need to make treatment access universal,” said Charles King, president of Housing Works and co-chair of a task force established by the governor to work toward ending the AIDS epidemic. “Anything less than that is both immoral and counter to the basic principles of sound public health policy.”

Liam Gibson, a resident of Suffolk County who provides hepatitis services at NY Harm Reduction Educators and is a member of the activist group VOCAL-NY, has been living with HCV for nearly 20 years. But he was recently denied treatment by Medicaid because his liver disease is not advanced enough. “I have a swollen liver, fibrosis, exhaustion and weakness, and mental effects,” said Mr. Gibson. “Just because Gilead is putting their profits before my life does not mean the state of New York can pretend I don’t exist. I need treatment now, not when I’m on death’s door.”

About 50% of HCV infections statewide are among people living Upstate and on Long Island. By the state’s own estimate, coverage criteria could exclude up to 60% of Medicaid patients with the disease—or nearly 40,000 people.

Hepatitis C is increasingly an issue that unites elected officials from both sides of the political aisle. Senator Phil Boyle (R-Bay Shore) stated that “as we seek treatment for the thousands of New Yorkers suffering from Hepatitis C, we must ensure that effective medications are not put out of reach for those who need them,” said Senator Boyle. “The entire purpose of the research and development of new drugs is to make all of those who are afflicted well, not just a select few. As with any disease, we need to ensure that all treatments and medications are made available to as many as possible, as soon as possible.”

“New York’s path-breaking commitment to ending the AIDS epidemic shows just how far we’ve come,” said Senator Gustavo Rivera (D-Bronx). “The same approach can control the hepatitis C epidemic, a life threatening—and curable—disease that affects communities across the state. The first step should be to simply ensure all doctors have access to the medication they need to adequately treat their patients.”

*Tracy Swan of the Treatment Action Group (TAG)*made an analogy to healthcare that many have come to take for granted: “We don’t make HIV-positive people in New York wait for treatment until they have AIDS, we don’t tell people who eat meat that they can’t be treated for heart disease, and so we shouldn’t withhold HCV treatment from people who need it. New York should not backslide into unethical cost-cutting.”

“It is clear that Gilead’s prices for Sovaldi and Harvoni are excessive and have no relation to the cost of producing these drugs,” said Luis Santiago of ACT UP New York. “However, the decision of whom to treat must be based on science. Cost and budgetary considerations must be dealt with through negotiations between producers and payers. In no case should they be used to deny access to patients for whom the treatment is indicated.”

Medical providers are already seeing the effects of treatment restrictions. “I have applied for Medicaid and Medicare coverage for various treatments including Simeprevir, Sofosbuvir, and Harvoni,” said Angie Woody, a hepatitis C patient navigator in New York City. “It is clear to me that the cost of these medications leaves patients beholden to their insurers for treatment and that doctors and insurers have conflicting criteria for ‘necessary medical care.’ In just the last month, we have had four patients denied treatment due to their lack of advanced liver disease.”

Advocates also point to how treatment access is a necessary precondition to ending the epidemic. “With no restrictions to HCV treatment and a commitment from NYS officials and the governor we can eradicate Hepatitis C in New York State,” said Jules Levin of the National AIDS Treatment Advocacy Project. “This approach will provide access to a cure, save lives, prevent transmission, and ultimately avoid billions of dollars in medical costs for the state. Considering all the other costs associated with HCV disease, it is clearly cost effective.”

Pointing to the global impact of HCV drug pricing, Michael Tikili of Health GAP said that “placing these particular restrictions on who can access Harvoni is a crime against the most marginalized of our communities and will only allow the HCV epidemic to spread further. It is unacceptable that millions of poor people living with hepatitis C around the world are being priced out of treatment because of Gilead’s greed. We will fight for access in our own backyard here in New York State, and around the world, wherever Gilead’s price gouging is leaving people to die without access to a lifesaving cure.”

MEDIA ADVISORY—FOR IMMEDIATERELEASE, October 26, 2014

WHERE: In Front of Bellevue Hospital Center, 462 First Avenue (between 27th & 28thSts.), New York City

U.S. & Global Leaders of the HIV/AIDS Response Hold Press Conference to Call on Governor Cuomo to Rescind Policy of Mandatory Home Quarantine for Persons Who Have Been In Proximity to Persons with Ebola Virus Disease

Monday, October 27, at noon (EST), leaders of the AIDS community and other public health experts will hold a press conference in front of Bellevue Hospital Center, 462 First Avenue, Manhattan. We will call on NYS Governor Andrew Cuomo to rescind the recently announced policy of mandatory quarantine of persons who have been in close proximity to people with Ebola virus disease (EVD).

On Friday, October 24th, Gov. Cuomo joined New Jersey Gov. Chris Christie to announce a new policy at Port Authority-operated airports, including John F. Kennedy and Newark International Airports—to question each person who has traveled in Liberia, Sierra Leone, and Guinea, and to order immediate mandatory 21-day quarantine of any person who acknowledges having been in proximity to persons with EVD. At least one person is already confined: a nurse who volunteered with Médicins Sans Frontières to care for EVD patients in West Africa is being held involuntarily at a New Jersey hospital under mandatory quarantine—despite a complete absence of any clinical indicator of EVD.

Governor Cuomo’s subsequent, slight revision to Friday’s announced policy, made Sunday evening under mounting pressure from the White House, public-health experts, and the AIDS community, was characterized by the Governor’s Office as a loosening—to “confinement” at home—but in fact, it remains a mandatory, 21-day quarantine, just at home, not in the hospital. As such, the revised policy still goes against evidence-based, CDC-recommended public health practices grounded in science, and it continues to contribute to ongoing misunderstanding of how the Ebola virus is transmitted and spread as well as to growing stigma and public panic.

Leaders in the HIV/AIDS response have circulated a letter to the Governor calling for rescission of the policy. Since Saturday, the group has collected over 100 signatures, including notable public health leaders such as Chris Beyrer, President at The International AIDS Society; Paul D. Cleary, Dean at Yale School of Public Health; Wafaa El-Sadr, Director of International Center for AIDS Programs; and Paul Farmer, Kolokotrones University Professor at Harvard University and Co-Founder of Partners in Health. In addition, the letter has received support from a diverse array of groups including amfAR, BROADWAYCARES/EQUITY FIGHTSAIDS, Empire State Pride Agenda, and numerous AIDS service and LGBT organizations.

At the 10/27 press conference, the group will address concerns that the new policy has no basis in current evidence on effective disease control. They will also raise the concern that these policies will inhibit medical volunteerism, which is critical to the fight against Ebola in West Africa. They will raise concerns that the policy conveys dangerously incorrect information by implying that Ebola can be easily transmitted by persons who are asymptomatic—a misunderstanding that will inevitably lead to stigma and discrimination. These leaders will also challenge the policy as unenforceable and counter-productive as a public health measure.

Long-time AIDS activist Peter Staley said, “It is unfortunate that the Governor has made such a hasty decision without consulting with leading public health experts. Having seen the stigma that has arisen around HIV/AIDS, I fear that stigma and fear are now going to become significant barriers to addressing Ebola.”

“We need sound science and evidence-based public health policy to address the Ebola crisis. In the United States we need public health policy free of fear, stigma, and discrimination. We must support the African nations heavily impacted by Ebola and the health-care professionals who risk their lives to care for those nations most affected,” stated Guillermo Chacon, President of the Latino Commission on AIDS.

Charles King, President and CEO of Housing Works, said, “If the logic of this new policy were sound, then we would be quarantining all of the New York City-based people, including first responders, nurses, and doctors, who are working directly with Dr. Craig Spencer, the Ebola patient who has been hospitalized since Thursday. Instead, we are imposing this policy only on people coming from Africa, clearly a response to hysteria generated by the media rather than what is in New Yorkers’ best interests.”

For Immediate Release: October 14, 2014

The Housing Works community commends Governor Andrew Cuomo and the New York State Department of Health for bringing the Governor’s previously announced plan to end AIDS as an epidemic in New York by 2020 a step closer to reality: Today, the Governor’s Office underscored its commitment to the 2020 end goal by announcing a multi-stakeholder end-AIDS Task Force to map out the details of the State Plan.

Housing Works President & CEO Charles King and NY DOH Office of Public Health Deputy Commissioner Guthrie Birkhead have been appointed as Task Force co-chairs. The rest of the Task Force is comprised of over 50 individuals representing organizations and groups from across the diverse spectrum of AIDS/HIV stakeholders in New York, including the Latino Commission on AIDS, National Black Leadership Commission on AIDS, Empire State Pride Agenda (ESPA), ACT UP NY, Treatment Action Group (TAG), the NYC Human Resources Administration (NYCHRA), NYC Department of Health & Mental Hygiene (NYCDOHMH), and the New York Academy of Medicine. (A full list of the Task Force members can be found in the press release from the Governor’s Office here.)

The Task Force’s primary mandate will be to deliver a comprehensive plan with concrete recommendations to end the AIDS epidemic, including budgeting, benchmarks, and metrics, to DOH & the Governor’s Office by the end of January 2015, and most of its work will be accomplished via four subcommittees on prevention, care, data, and housing and supportive services. The first meeting of the Task Force is taking place today Tuesday, October 14, at the Troy Hilton Garden Inn from 11:00am to 5:00pm. Four subsequent Task Force meetings will follow through the end of the year, and the locations will alternate between the Capital Region and New York City. The meetings will be made public and are viewable via webcast at http://www.governor.ny.gov/. A series of Task Force-led community listening sessions will also be scheduled during the next few months.

Housing Works President & CEO Charles King stated, “I am grateful to the Governor and the Department of Health for their boldness and for the opportunity to be one voice among many crucial perspectives guiding the end-of-AIDS Task Force recommendations. For years, I have said that even without a vaccine or a cure, we have the tools to end AIDS as an epidemic right now. The primary missing component has been a lack of political will. With the convening of this Task Force, the State is taking the first step in making good on its promise to bring the full force of government and its resources to bear on ending AIDS. My hope is that this historic public commitment will inspire other jurisdictions around the U.S. and the globe to step forward with similar accelerated targets that will allow us to finally end the epidemic by 2030.”

The Task Force is the natural next step in recent state developments in the fight to end AIDS in New York: On June 29, 2014, coinciding with NYC Gay Pride, Governor Cuomo made history by committing New York State (NYS) to ending AIDS as an epidemic by 2020, even without a cure, by stopping deaths from HIV disease and eliminating new HIV infections. The declaration builds on recent scientific findings that early HIV treatment can reduce new transmissions of the virus by 96% and that two anti-HIV drugs given together, when taken daily as prevention, can reduce new infections by over 90% and was the result of over a year of community-led work and collaboration. Housing Works, Treatment Action Group (TAG), and other coalition stakeholders praised this bold announcement and then urged the State to appoint a high-level Task Force to develop the strategic roadmap and plan to get us there. Today’s announcement was an answer to that call. In doing so, NYS will save hundreds of thousands of lives and serve as a national and global model for ending the epidemic.

The Governor’s June announcement and now this newly convened Task Force infrastructure reflect a recognition that the landscapes of HIV and health care have changed: Although there are more New Yorkers living with HIV than in any other state in the nation, it is finally within our reach to end the epidemic that has plagued us for more than 30 years. New York has the people, institutions, resources, and tools needed to end AIDS as an epidemic by stopping new HIV infections and eliminating AIDS-related deaths. Political commitment and leadership are the necessary, final ingredients to make ending AIDS in NYS a reality.

New York, NY – Housing Works is excited to announce on Thursday, November 20th 2014, world renowned fashion designers and this year’s Co-Chairs, Zac Posen and John Varvatos, will come together with New York City’s charitable, social and fashion communities for its annual Fashion for Action event. Supported by hundreds of the fashion industry’s most influential designers, the highly anticipated event is an exclusive designer discount sale featuring a curated collection of sought after luxury brands. Proceeds from this charity event will support Housing Works’ youth outreach programming, which provides dedicated HIV-prevention and treatment services for young people living with HIV/AIDS or at risk of infection.

Guests attending the event will get first dibs on over a million dollars worth of new, high-end apparel, accessories and merchandise at the intimate shopping party located at the newly renovated Housing Works Chelsea Thrift Shop, then dance the night away at the Rubin Museum of Art. Tickets are now on sale with a small number of $100 general admission tickets for a limited time only.

This year, Housing Works is thrilled to be partnering with celebrated fashion designers Zac Posen and John Varvatos as Fashion for Action Co-Chairs. Together they will leverage their influence and leadership to create an inspiring, fun and creative event.

“It’s always rewarding to see our design community come together to support a good cause,” says Posen. “Fashion for Action is more than just a fun night of shopping; it’s a way for us to raise awareness for HIV/AIDS. We would love for NYC to come out and shop, guilt free!” Varvatos adds, “I’m excited to be on board for this year’s Fashion for Action. Housing Works shares the same energy and passion that I have for this city, and it’s important for me to support their mission.”

Tickets:
Tickets start at $100*
Available at Eventbrite
*A small number of general admission tickets are available for a
limited time at $100.

About Co-Chairs

Zac Posen

Zac Posen launched his eponymous collection in 2001, with a vision for modern American glamour that married couture technique with striking innovation. Envisioned in his New York atelier, Zac introduced a collection that combined legendary Hollywood glamour with a downtown sensibility, enhancing women’s natural forms and enabling them to be their most alluring, empowered selves.
Today, Zac is known globally for his technique in artisanal craftsmanship, anatomical construction and textile manipulation. His collections have grown to include Zac Posen, ZAC Zac Posen and Z Spoke Zac Posen with offerings in handbags, accessories, eyewear and fur. The collections are found in leading department and specialty stores worldwide. Zac recently entered the bridal space with the launch of Truly Zac Posen in partnership with David’s Bridal, in stores since February 2014, and has recently ventured into an eyewear partnership with Kenmark Optical, arriving in stores in September 2014.
Most recently, Zac has served as a judge with Heidi Klum and Nina Garcia on Lifetime’s mainstay Project Runway, now in its thirteenth season.

John Varvatos

John Varvatos grew up in Detroit – the music melting pot of America – where Motown, rock & roll, blues, jazz, and punk melded together in an unforgettable period of music history. At an early age John was exposed to defining musicians including The Who, Led Zeppelin, Detroit’s own MC5, Alice Cooper, Bob Seger, and The Stooges. The creative spirit, electricity and edginess intrinsic in the personal style of these rock ‘n’ roll icons inspired John and influenced the evolution of his eclectic sensibility. This can be seen as a unifying theme in his design and it is deeply ingrained in every expression of his brand, which includes his famed 315 Bowery boutique in New York City, formerly the seminal underground music club CBGB’s. Here, Varvatos pays tribute to the musical heritage of this legendary site.

With a unique brand position that unites a rock n’ roll sensibility, old world craftsmanship and modern innovation, Varvatos has become one of the most well-known menswear designers in the world.

In October 2013 John released his first book entitled, John Varvatos: Rock in Fashion, which documents the elements of rock style that have embodied the music community for decades. Most recently, further rooting the brand in music, John Varvatos has entered into a strategic partnership with Republic Records to launch John Varvatos Records in February 2014.

About Fashion for Action:
Fashion for Action began in 2004 with founding chair Andre Leon Talley and the late Natasha Richardson at the helm. Past event chairs have also included Thom Browne, Patricia Clarkson, Francisco Costa, Dree Hemingway, Marc Jacobs, Natalie Joos, Derek Lam and Rachel Roy. Together with the support of the fashion and beauty community, the benefit has grown to raise $400,000 in 2013 and almost $5 million towards the fight against HIV/AIDS in New York City.

About Housing Works:
Housing Works is a vibrant, healing community of people living with and affected by HIV/AIDS. Our mission is to end the dual crises of homelessness and AIDS through relentless advocacy, the provision of lifesaving services, and entrepreneurial businesses that sustain our efforts. Housing Works is the largest grassroots AIDS organization in the U.S., as well as the largest minority-controlled AIDS organization.

For more information about Fashion for Action or Housing Works, please contact Katherine Oakes at K.Oakes@housingworks.org or 212.966.0466 Ext. 1124. Visit Eventbrite.com for more details on Fashion for Action 2014; for more information on Housing Works visit housingworks.org. Join Housing Works on Facebook.

News > Press Releases > CYCLIST-ACTIVISTS TAKE TO THE STREETS FROM BOSTON TO NYC TO FIGHT AIDS

CYCLIST-ACTIVISTSTAKE TO THESTREETSFROMBOSTON TO NYC TO FIGHTAIDS

New York, NY- Starting September 12th, over 100 physical activists, along with a 60 person road crew and thousands of virtual and “real life” supporters will come together to raise vital funds and awareness for HIV/AIDS and homelessness by completing a 285 miles, three-day journey from Boston to NYC.

BRAKING AIDS® Ride benefits Housing Works, a non-profit organization providing lifesaving services to thousands of people living with HIV who have limited or no financial resources to cope with this disease. In just two years BRAKING AIDS® Ride has raised over half a million dollars and the support continues to flourish.

“Every time another organization or individual steps up to help support the mission, our community grows, our support grows, the fight to end AIDS becomes stronger, and we get closer to an AIDS-free future,” said Mikola De Roo, VP of Advocacy Communications & Marketing at Housing Works, a three-time Ride participant.

One such individual, former Project Runway star and notable HIV activist Jack Mackenroth joined the Ride with the goal of raising $50,000 in just seven weeks. He’s documenting his journey for his hundreds of thousands of social media followers – and rewarding donors with personalized “sexy selfies” on Instagram, Facebook and Twitter.

In East Harlem, PS 102 Principal Craig Pinckney will get a warm welcome home from his community as his school hosts the last “Oasis” rest stop before the finish line. In a neighborhood with one of the highest incidents of HIV in New York City – rivaling infection rates in some third world countries – a PS 102 parent has invited other parents and local merchants to participate, and even brought together a student cheerleading squad to show their support. The result will be a heartfelt, teachable moment for East Harlem youth to learn about both AIDS and the people committed to fighting it.

The closing ceremony will be held at 5:00 pm on Sunday September 14th at Keith D. Cylar Community Health Center on East 9th Street. As the riders arrive to the roaring welcome of friends, family and Cylar House residents, memorial flags will be hoisted to commemorate those lost in the fight against AIDS. For more information or for those wishing to attend the closing ceremony please visit www.brakingaidsride.org.

About Housing Works:
Housing Works is a healing community of people living with and affected by HIV/AIDS. Our mission is to end the dual crises of homelessness and AIDS through relentless advocacy, the provision of lifesaving services, and entrepreneurial businesses that sustain our efforts.

Bryan C. Jones has been living with HIV for almost 31 years. He lives in Cleveland, Ohio where he is active as an advocate on HIV-related issues at the local, state and national levels. He founded Gentlemen’s Quarterly, a men’s support group with more than a hundred members. He’s a peer educator, a member of the steering committee for the Campaign to End AIDS, and a performer with a one-man theatrical piece called And I Die Slowly dealing with his journey through life with HIV. He was interviewed by CHLP’s Andrea Sears.

Andrea SearsHow did you become involved in the movement against the criminalization of HIV?

Bryan JonesWell it’s always been an issue with me and I was at a conference where I heard someone from the Center for HIV Law and Policy speak. I’d always wanted to do something, but I didn’t have an idea about how to do it. You know I constantly try to keep educating myself by going to conferences so from that point on I got involved. I think it was about three or four years ago.

And then I was on one of the CHLP conference calls, and they were having these roundtable discussions or these meetings in different cities and I kept asking them, “Well, why can’t you have it in Ohio? You know we need it just as much as anyone else.” I was the only person from Ohio on the call and I kept bugging them and they said OK. So we finally got together and organized a panel discussion here in Cleveland and about a hundred people showed up. It was really successful. So from that point we got other people involved from different cities in Ohio so now we have three different groups.

I went to a national leadership conference that I’m involved in organizing and I had Rashida Richardson come talk about it there, and it just kind of snowballed from there.

AS Have you had personal experience or known people who’ve been personally affected by HIV criminalization in Ohio?

BJOh yes I do. I haven’t been criminalized, but I live my life every day in fear of being criminalized. So I’ve been personally affected for years, just on my own, waiting for somebody to knock on my door. Not that I don’t disclose, but you never know. It affects your life to where you don’t really want to be in a relationship because it’s hard to prove, you know, short of getting someone to sign something. Most people don’t want to sign anything. They really want to be in a relationship or something. Yeah, a relationship is one thing, having sex is another thing.

Many of the affected people are in the transgender or the sex worker communities. I’ve known people who’ve been arrested and prosecuted two, three times.

AS What are the laws in Ohio that are most frequently invoked for prosecuting people with HIV?

BJ We do have an HIV-specific mandatory disclosure law on the books. And it’s more so used with people arrested for solicitation after receiving a positive result. But solicitation is such a broad range of things. If you are walking down the street and you approach a car or wave at someone in a car, it could be a friend or anyone, they could stop you and say you were soliciting. Or you could be coming out of a club. And like I said it’s very big with the transgender community.

You can have too many condoms in your bag, which will lead the police to think there’s probable cause that you were soliciting. They just come up with all kinds of things. You could be someone they have known who’s solicited before. But just because you may be out somewhere, it doesn’t mean you’re out soliciting. So that’s how it’s mainly used.

I knew a guy who was living with a woman. Four years they were living together. She claims that he didn’t tell her his status. I find that hard to believe that if you’re living with somebody and he’s on medication and he’s in treatment, in care, that you wouldn’t have disclosed. But at any rate they ended up giving him ten years.
So that’s just like it is. Like I said, almost everyone is affected by this. You have some people who don’t want to disclose so they isolate. I have known people who, as a result of this, just died in silence because disclosure plays a big part in your quality of life, or failure to disclose or having to disclose.

I’ve known people who get a positive result and at the same time you get that positive result you have to sign a form that says it’s a felony to not disclose, to have sex, and a lot of people barely understand what it means at that point to be HIV positive. So now you’re telling me I’m HIV positive, now you’re telling me it’s a felony. I can’t even read the language on this paper and really understand what you’re telling me. So you know what? I’m just going to isolate myself and go into depression, which eventually causes substance abuse issues. I mean it’s a gateway to so many other things that people don’t even realize, and may never again have this conversation about the nondisclosure laws or these HIV specific criminalization laws, it reduces the quality of life that people have.

ASWhat is the status of the efforts in Ohio to reform or repeal the HIV specific criminal law?

BJComing up in October we’re having a big rally. I was responsible for getting the Campaign to End AIDS National Advocacy Leadership Summit to convene here in Cleveland. My hope is to get advocates from around the country, as well as Jamaica and Africa, to come to Ohio and to help me have a big rally downtown dealing with HIV criminalization. We’re also talking with the Cleveland city council and county legislators, and moving towards Columbus, Ohio, which is our state capital.

There’s room on the platform for all of us, but we need to get more positive people at the forefront of the fight because we’re the ones that are affected.

ASAnd how have the Positive Justice Project and the Center for HIV Law and Policy been helpful in this effort?

BJ It’s been very helpful. First of all it has a wealth of resources and information. Also it puts you in contact with people from around the country. And it was very instrumental in helping me organize here in Ohio. It gave me a vehicle to move through and a vehicle through which to understand what was going on with HIV criminalization.

And it also made me realize that one person can make a difference because, like I said, I joined a conversation and said, “Ohio needs this.” And things started to happen. So now we’ve had several successful panel discussions around the state. And they have been instrumental in that.
Also, every time I call on the Center for HIV Law and Policy for information they’ll send it to me promptly. They have no problem with coming into a city and helping me with a discussion or panel or something to that effect. As a matter of fact I am going to be engaging the Positive Justice Project to help me solidify the language for the
rally that I’m doing in Cleveland in October.

I’m a staunch supporter of the Center for HIV Law and Policy and the Positive Justice Project. They’ve brought clarity to my life, put it that way.

CHLP’s Unsung Heroes is a series of portraits included in The Fine Print blog of individuals who are contributing mightily, without fanfare, to keep our issues, needed agencies, and members of our communities alive.

NEWYORK, NY – Housing Works semi-annual Best of Fall shopping event starts August 30th and features new and vintage versions of hottest styles of the season at a fraction of retail! TWELVE of our thrift shops throughout the city have re-stocked their shelves with top-quality donated merchandise, including furniture and art. Find designer favorites like Diane Von Furstenberg, Oscar de la Renta, Chloé and Campomaggi. You can even shop from home starting September 17th with our exclusive online sale.

COST OF ENTRY: Entry to each sale is FREE; however, Housing Works members get early access! Supporter level and above members get in one hour early, Advocate level and above members get in 30 minutes early! Not a member? Join online at HousingWorks.org/membership, email membership@housingworks.org or call 347.473.7457. Please remember the deals are so good we cannot give member discounts during the sales event.

ABOUTHOUSINGWORKS:
Housing Works is a healing community of people living with and affected by HIV/AIDS. Our mission is to end the dual crises of homelessness and AIDS through relentless advocacy, the provision of lifesaving services and entrepreneurial businesses that sustain our efforts. Housing Works Thrift Shops help fund this effort by selling new and used donated goods.

“This step by Governor Cuomo, setting a clear goal to end the AIDS crisis in New York State, is absolutely courageous,” said Housing Works CEO Charles King. “In doing so, the Governor is reshaping the way we think about the AIDS epidemic and is setting a new standard for leaders of other jurisdictions in the United States and, indeed, around the world.”

Governor Cuomo’s announcement reflects his recognition that the landscapes of HIV and health care have changed. Although there are more New Yorkers living with HIV than in any other state in the nation, New York has the people, institutions, resources, and tools needed to end the epidemic that has plagued us for more than 30 years by stopping new HIV infections and halting AIDS-related deaths. Based on progress and an expansion of advancements that have already been made—from new prevention and testing technologies to highly effective antiretroviral treatments—we have the science to make the ambitious goal of decreasing new HIV infection to below epidemic levels by 2020 viable. A successfully treated HIV+ person can live a healthy life and is virtually unable to transmit HIV to others. New HIV prevention tools beyond condoms, such as PrEP and PEP, combined with these advances, mean we can end AIDS as an epidemic even without a cure.

New York State has already been laying the groundwork to reach that goal. Always been a leader and center of innovation in the fight against AIDS, New York has experienced a decrease in new HIV diagnoses of nearly 40% in the last decade, with fewer new infections each year. By contrast, there has been no decline in the number of new HIV infections diagnosed nationally each year, which has remained static at roughly 50,000. Political commitment and leadership are the necessary, final ingredients to make ending AIDS in NYS a reality. Our current strategies will work, and it is the full force of government that will enable us to bring these strategies to scale.

Changes in health-care access will also be critical to making ending AIDS a reality. “With the new momentum from Affordable Care Act (ACA) implementation, we now have the ability to get more people into primary care, especially those at risk,” said Housing Works COO Matthew Bernardo. “Likewise, New York’s successful Medicaid reform frees up funds for support services vital to HIV treatment adherence.”

Also crucial will be follow-through via the creation of a high-level State Task Force to develop and design a strategic roadmap with concrete steps and benchmarks for the Cuomo Plan to End AIDS in New York State. “We believe it will be critical for the Governor to appoint a strong, multi-stakeholder Task Force to collect input, engage the community, and quickly develop a comprehensive plan to end the epidemic,” said King, “just as he did with Medicaid redesign.”

The journey that led to the Governor’s announcement today has required intense collaboration and dialogue between all stakeholders. One key component was the securing commitments from top drug manufacturers to give the State discounts on HIV medications. Housing Works and its community partners worked behind the scenes with key government and pharmaceutical industry players during the past six months to facilitate discussions and make sure those drug-discount negotiations took place. The result: Gilead Sciences, Bristol-Myers Squibb, and AbbVie, which collectively represent 73% of the market in New York, have agreed to let the State purchase its HIV drugs in bulk at significantly reduced cost. We are also urging the remaining holdouts—ViiV Healthcare, Janssen, and Merck—to step up and make similar commitments.

It’s those kind of structural changes that may prove to be huge game-changers. “Any successful State plan will use today’s cutting-edge science to drive down the rate of new infections and keep people living with HIV healthy,” said Bernardo. “But to truly succeed, we need to make sure no one gets left behind. That means greater access to care and greater retention in care. The Cuomo Plan will need to reach high-risk groups where new HIV infections remain startlingly high—people of color, men who have sex with men, and transgender women. Toward that end, many non-medical interventions will be equally crucial. Some of those efforts have already begun, such as the 30% rent cap for people with HIV that Governor Cuomo and Mayor de Blasio put together recently. We must also ensure that persons who are already HIV+ have access to housing, work opportunities and other supports that allow them to live their lives whole.”

Governor Cuomo’s support for an end-of-AIDS plan is not only the right choice, it’s also cost-effective. A status-quo approach to HIV is expensive—in human lives and public spending. In New York, “stability” means about 130,000 New Yorkers living with HIV and close to 3,000 new HIV infections annually. The cost of these 3,000 new infections adds at least $36 million in HIV medicine costs alone every year. By contrast, every averted HIV infection saves the State over $400,000 in lifetime medical costs. Current HIV prevention and care efforts save NYS $1 billion every year through improved health outcomes and prevented infections. A State Plan to End AIDS will double those savings, freeing funds that could be re-allocated to address other health issues.

Not so long ago Governor Cuomo signed same-sex marriage into New York law and said, “What this state said today brings this discussion of marriage equality to a new plane. That’s the power and the beauty of New York. The other states look to New York for the progressive direction.”

New York can do the same thing in the AIDS epidemic: Our Governor can bring ending AIDS to a new plane. “We want to thank the Governor,” King said, “for seizing this amazing opportunity to end AIDS as an epidemic in our state, and, in doing so, for sending out a challenge to the rest of the nation.”

Housing Works is a healing community of people living with and affected by HIV/AIDS. Our mission is to end the dual crises of homelessness and AIDS through our relentless advocacy, the provision of lifesaving services, and entrepreneurial businesses that sustain our efforts.

Advocates and members of the LGBT and AIDS communities applaud New York Governor Andrew Cuomo for his public declaration today to make the end of the AIDS epidemic in New York by 2020 a State priority. Governor Cuomo’s announcement reflects his recognition that the landscapes of HIV and health care have changed: Although there are more New Yorkers living with HIV than in any other state in the nation, it is finally within our reach to end the epidemic that has plagued us for more than 30 years. New York has the people, institutions, resources, and tools needed to end AIDS as an epidemic by stopping new HIV infections as well as AIDS-related deaths. Political commitment and leadership are the necessary, final ingredients to make ending AIDS in NYS a reality.

In June 2013, a remarkable coalition of over 30 New York organizations, among them LGBT and AIDS groups, asked Governor Cuomo to publicly commit to an end to AIDS as an epidemic in New York by the year 2020 and to appoint a high-level State Task Force to develop a strategic roadmap and plan. In doing so, New York State (NYS) will save hundreds of thousands of lives and serve as a national and global model for ending the epidemic.

We have the science—from new prevention tools beyond condoms, like PrEP and nPEP, to testing technologies to highly effective antiretroviral treatments that make an HIV+ person virtually unable to transmit HIV to others. With these advances, we can end AIDS as an epidemic even without a cure.

We also have momentum from Affordable Care Act (ACA) implementation and New York’s successful Medicaid reform putting more people, especially those at risk, into primary care and freeing up funds for support services vital to HIV treatment adherence. Add in community support, social protections, such as the recent passage of an affordable housing protection for people living with HIV, and deals with about 70% of HIV pharmaceutical makers to give the State discounts on HIV medications, and we can indeed make the vision of an end of AIDS in New York turn into a reality. With the full force of the Governor’s leadership and a shared commitment with the government, we can take our current, effective strategies and bring them to scale.

In celebration of this historic commitment by Governor Cuomo, Housing Works and other organizational allies, including Treatment Action Group (TAG), ACRIA, Harlem United, GMHC, VOCAL-NY, and ACT UP, are convening a joint press conference prior to the NYC Pride March on Sunday, June 29, at 10:30AM on 42nd Street at 5th Avenue in Manhattan (between 5th and 6th Avenues but closer to 5th Avenue). Please join us so we can share our reactions to the Governor’s announcement of a State Plan to end AIDS by 2020.

Image – Steven Richmond from Plano (TX) participates in a brainstorming session with other YAIers.

Richardson, Texas – Last week marked the tenth year of the annual Youth Action Institute (YAI), a week-long “bootcamp” sponsored by the Campaign to End AIDS coalition. The primary goal of this annual event is to train and turn out a new generation of young AIDS activists and leaders.

YAI 2014 was hosted in Dallas, Texas, and the adult-supervised but youth-run convening opened with positive training sessions designed to educate attendees and help them become the AIDS policy-makers and protest leaders of today and tomorrow. A short but intense week later, the capstone was an encouraging end product created by the participants of this YAI: an online, social media action called eliminiAIDS, created to promote awareness of the larger national advocacy campaign to end AIDS in the U.S and worldwide.

YAI 2014 was attended by 37 participants ranging in age from 18 to 31, 32 of them hailing from 11 states across the country as well as another 5 attendees from Trinidad and Tobago. The group also represented a diverse mix across a number of demographics—HIV+, LGBT, race, and ethnicity.

The different training sessions focused on topics such as different levels of advocacy, how to advocate for policy change, and how to tap into media and social media resources to spread a message or raise awareness for a campaign. Throughout the week, the youths also met with the local Dallas organizations the Afiya Center, Youth First, U-BE, and Black Trans Men Inc.

After meetings with local organizations over the first two days of YAI, participants engaged in a community debate as to how to move forward, presenting the following focus issues:

• provide feedback from youth on the Global Millennium Development Goals
• integrate youth into the national advocacy campaign to end AIDS in the U.S. by 2025 and globally by 2030
• increase access to employment by LGBT youth in Dallas
• raise awareness about employment discrimination of the transgender community in Dallas.

Via discussions with local organizations and as well as dialogues among themselves, the YAI group came to the conclusion that they would plan their direct action at the end of the week in order to raise awareness about the discrimination faced by the transgender community of Dallas.

YAI 2014 Results: The eliminAIDS Campaign

After much debate, the group decided to focus on the national advocacy campaign to end the epidemic by 2025 in the United States and by 2030 globally. The strategy developed was the use of an online, integrated social media action in order to gain awareness for the campaign created by the group: eliminAIDS.

eliminAIDS’ mission is to improve health care through the even distribution of the Affordable Care Act in all states, ending stigma, and to raise awareness on a national scale through the “elimin[AIDS] 2025” campaign to create an AIDS-free environment by 2025.

The participants, along with the help of all the facilitators throughout the week, were able to create a cohesive message of eliminAIDS along with supporting video, photos, and other materials on a newly designed and launched website. The group also hosted a live Twitter conversation on Friday, June 20, to raise awareness for eliminAIDS. This conversation ended with dozens of outside participants, as well as hundreds “Likes” on the newly created eliminAIDS Facebook page. (Just in the week since the launch of that Facebook page, the site’s “Likes” now exceeds 700.)

eliminAIDS Four-Point Strategy for Ending AIDS

The eliminAIDS campaign features a four-pronged approach to ending the epidemic:

• increasing HIV viral suppression to 80%

• decreasing HIV incidence to < 0.5%

• ending the disparities in HIV incidence and prevalence

• ending HIV stigma

eliminAIDS aims to gain traction alongside other organizations in the campaign to end the national HIV & AIDS epidemic by 2025. See the launch video below for more details.

Yesterday both the House and Senate State and Foreign Operations subcommittees (SFOPS) marked-up their appropriations bills. The House has done what we were asking for FY’15 – they have moved the $300M that cannot be appropriated to the Global Fund right now into PEPFAR (therefore, global AIDS isn’t losing that money, and global AIDS is level funded from the current budget through to next year).

However, the Senate has NOT moved the $300m over to PEPFAR. That $$ has disappeared from the global AIDS portfolio in the Senate bill. We’re losing $300M —particularly devastating on top of $600m in cuts to PEPFAR since 2010.

We have until THURSDAY to get to appropriators on the Senate side to introduce an amendment to the bill. Sen. Mikulski is chair of the Approps Committee.

Here’s what we need to do:

1. Call Senator Mikulski’s office to demand that she prevent the funding cut to Global AIDS. Call in script below

Sen Mikulski’s DC office: 202 224 4654

Hi, my name is —————————————— and I’m calling to urge Senator Mikulski to protect global HIV/AIDS programs from the funding cut that has been proposed in the Senate Foreign Operations Subcommittee. The loss of $300M to the global AIDS portfolio plus years of additional cuts to PEPFAR are harming our effort to reach an AIDS-Free Generation. This Thursday in the Appropriations Committee, will the Senator ensure that the $300M that has been cut from global AIDS from FY14 levels is put back into the FY15 PEPFAR program?”

2. Call Senator Coon’s office. Call In script below:

Coons DC office: 202 224 5042

Hi, my name is ————————— and I’m calling Senator Coons to protect global HIV/AIDS programs from the funding cut that has been proposed in the Senate yesterday. The loss of $300M to the global AIDS portfolio that was proposed by Appropriations Subcommittee members yesterday will be devastating to lifesaving global AIDS programs, and comes after years of additional cuts to PEPFAR since 2010. I have admired the Senator’s commitment to global health, and urge [him/her] to do everything possible to ensure that this funding cut against FY14 is not implemented. Will the Senator introduce an amendment this Thursday in the Appropriations Committee to the State and Foreign Operations bill that ensures the $300M is not cut entirely, but rather redirected from multilateral programs into the PEPFAR program?“

3. If you feel like it, and particularly if you are in any of their districts, do the same thing with any of these appropriators:

For Immediate Release: June 5, 2014

Governor Cuomo’s Administration announced a welcome policy change today, one which removes the surgical requirement for New Yorkers to change the gender marker on their birth certificates. The decades-old Department of Health policy required that transgender New Yorkers provide invasive, detailed documentation, such as operating room reports, in order to change the gender marker on their identification.

The new policy, which aligns with requirements from other state agencies and the federal government, requires certification from a licensed medical provider stating the applicant is undergoing treatment. This change is happy news to the thousands of New Yorkers who remain vulnerable without matching identification documents. According to the National Transgender Discrimination Survey, 40% of transgender people have faced harassment when presenting identity documents that do not match their gender identity/expression. A recent case-in-point: Just over a month ago, transgender community members in Holbrook, Long Island, participated in a protest outside a local Irish bar, following an incident in which Dier, a transgender woman, claims she was mistreated by the bar staff. Dier said was denied admittance from the bar and was questioned about her ID because she didn’t “match” the gender on her driver’s license. According to Dier, the situation escalated after Dier explained the disparity by revealing she is transgender, and the bar worker became rude, lapsing into transphobic slurs and physical bullying. Unfortunately, in the transgender community, such experiences are common rather than an anomaly, so the updatedNew York State policy is a long-awaited move in the right direction.

In New York, the Department of Motor Vehicles has been providing gender-appropriate identification cards since 1987, when it eliminated its surgical requirement in favor of a medical certification from a physician. Other states have amended their comparable policies as well, including California, Oregon, Vermont, Washington, and the District of Columbia. More information can be found at the Department of Health’s Bureau of Vital Records at health.ny.gov/vital_records/birth.htm.

While we continue the fight for the passage of GENDA (Gender Expression Non-Discrimination Act) in New York, a bill that would extend civil rights protections to transgender and gender non-conforming New Yorkers, Housing Works commends the Governor’s office for taking this important step in the direction of transgender equality and justice in New York State. “This policy change is a long-overdue victory,” asserts Charles King, President and CEO of Housing Works. “The right to base-level recognition of who we are, to be visible without fear of discrimination, harassment, physical threats, violence, or verbal abuse is the sort of thing many of us take for granted. Transgender people ultimately want to be allowed to live their lives whole, and so we applaud the state for modernizing this antiquated policy, which takes one step toward making that a reality.”

New York—At yesterday’s City Council General Welfare Committee hearing, NYC Human Resources Administration (HRA) Commissioner Steve Banks announced the appointment of long-time AIDS activist and Housing Works ally Daniel Tietz to the position of Chief Special Services Officer at HRA. This new hire is another step in Banks’ ongoing plans to reorganize HRA and improve its effectiveness. The most recent sign of this ongoing commitment by the de Blasio Administration to better serve low-income New Yorkers was the deal reached earlier this year with Governor Cuomo to cap rents for poor individuals and families living with AIDS and HIV at no more than 30% of their income, thereby providing affordable and stable housing. As Mayor de Blasio noted in his comments to the crowd of over 30,000 participants in the annual NYCAIDS Walk this past Sunday, the 30% rent cap passage is a change that LGBT and AIDS advocates have spent years pushing for that finally got some traction with the support of city allies like NYC Deputy Mayor for Health and Human Services Lilliam Barrios-Paoli and HRA Commissioner Steve Banks, among others: “We’re now in the fourth decade of the fight against HIV and AIDS….. sometimes when a struggle goes on so long, people lose their sense of urgency. Sometimes people drift away. But you haven’t let that happen. This crisis continues, and we have more to do….It [the 30% rent cap] took a long time, but people in the community stood up and demanded it, rightfully, and we’ve now gotten it done.”

Tietz, an R.N. and an attorney who has been the Executive Director of the AIDS Community Research Initiative of America (ACRIA) since 2006, has three decades of leadership and advocacy experience in government and non-profit organizations. Previous roles include Deputy Executive Director for Day Treatment and Residential Services at Housing Works, Deputy Executive Director for Operations at the Coalition for the Homeless, and senior staff for the Deputy Commissioner of the Massachusetts Department of Mental Health. In Tietz’s new role as Chief Special Services Officer at HRA, he will oversee the HIV/AIDS Services Administration (HASA), Adult Protective Services, Emergency Management, and the Customized Assistance Services division, as well as a staff of 2,500 and a budget of $450 million. Tietz will begin in his new position on June 17.

Charles King, President and CEO of Housing Works, congratulates HRA and Dan Tietz on the new appointment:

“Dan has been a long-time fierce advocate on the frontlines of the fight to end AIDS for many years. He brings to the table many years of service helping to give voice to the needs of the voiceless in our communities, as well as a unique perspective that brings together activism with a diverse background in health, human services, and housing. That collective experience will make him a fantastic ally in city government as we continue to push for a state task force that will craft and implement a strategic plan to drive down new HIV infections and end the AIDS epidemic in New York by 2020.”

The White House Office of National AIDS Policy (ONAP) announced that it will host a series of regional listening sessions this summer on the implementation of the National HIV/AIDS Strategy (NHAS). Mr. Douglas Brooks, ONAP’s newly appointed Director, will lead the listening sessions, which will be part of a visit to each community that will include site visits to organizations engaged in the community’s efforts to improve outcomes along the HIV Care Continuum. The purpose of the listening sessions is to better understand local and state level efforts related to the implementation of the NHAS, including discussion about how the Affordable Care Act (ACA) is helping advance the Strategy. The meetings are open to the public with the goal of engaging many stakeholders about the innovations, successes, and challenges being experienced at the state and local levels.

First Listening Session in Jackson, Mississippi

The first of these listening sessions will be held in Jackson, Mississippi on Thursday, May 29, 2014 from 2:30 PM-4:30 PM at the University of Mississippi Medical Center Conference Center.

The listening session is free and open to the public. However, pre-registration is requested so that organizers know how many attendees to expect. To RSVP, please visit: https://www.cmpinc.net/onap. Upon submitting your RSVP, you will receive a detailed confirmation letter via email.

Subsequent Listening Sessions

In early June, ONAP will host two more listening sessions.

~ Columbia, SC on Tuesday, June 3, 2014 from 3:00 PM-5:00 PM at the University of South Carolina School of Law
~ Atlanta, GA on Thursday, June 5, 2014 from 2:00 PM-4:00 PM at the Loudermilk Center- Atlanta Conference Center

Ask your Representative to OPPOSE the Proposed Cuts to HOPWA in FY15 & Register Now for the May 22nd HOPWA Formula Modernization Webinar

On Wednesday, May 7, the House Appropriations Subcommittee on Transportation, Housing, and Urban Development (T-HUD) marked up its funding bill for fiscal year (FY) 2015. The HOPWA program is funded at $303 million, representing a cut of almost $30 million dollars from the FY14 budget and far below the President’s request of $332 million.

We need YOUR help because this funding level is unacceptable and will mean serious cuts to our programs! Please contact your representatives RIGHTAWAY and urge them to work with the Appropriations committee to ask for a FY2015 funding level at the Community Ask of $350 million, or at a minimum, the amount in the letter circulated by Congressmen Nadler, McDermott, and Crowley requesting a budget for FY15 of $335 million.

In FY2014, HOWPA received an appropriated level of $330 million. This number and the House letter request do not represent a budget that will meet the community’s actual need; however, they would provide at least the minimum to maintain current services provided by HOPWA program.

Until May 18, Representatives are at home in their districts. This is a great opportunity to reach out to them at their home offices and ask them to support HOPWA programs or invite them to visit your program and see the importance of HIV/AIDS housing firsthand.

What Else You Can Do:

1. Call your Representative’s Washington, DC offices RIGHTAWAY. Ask to speak to the staffer who handles housing issues. Congressional office phone numbers can be found by calling the congressional switchboard at 202-224-3121.
2. Explain the importance of HOPWA and why it is important for Congress to increase funding for the program moving into FY2015.
3. Please let us know the outcome of your outreach by emailing us at nahc@nationalaidshousing.org

Remember, your voice is the most important in letting your Member know the importance of HOPWA in your community.

Thank you for all that you do,

The National AIDS Housing Coalition

~~MAY 22nd: HOPWA Modernization Webinar~~

Join the National AIDS Housing Coalition (NAHC), the Southern AIDS Coalition, Southern HIV/AIDS Strategy Initiative, and HIV Prevention Justice Alliance for a community discussion on the formula modernization proposal for the Housing for Persons with AIDS Program (HOPWA).

The President’s FY15 budget proposal included significant changes, such as, the addition of new short-and medium-term housing interventions, assistance for homeless persons, and increased administrative fees. Additionally, the update included a momentous change to the HOPWA funding formula.

Partners from NAHC, AIDS Alabama, AIDS Project Los Angeles, and AIDS United will share an overview of the HOPWA changes, present community perspectives from differing jurisdictions, and provide context of the current political landscape. The webinar will end with a Q&A session and opportunity for comment, with the goal of building community input and consensus on a fair and equitable way to implement changes to the HOPWA funding formula.

NEWYORK (AP) — The New York Police Department will no longer confiscate unused condoms from suspected sex workers to be used as evidence of prostitution, ending a longstanding practice that had been criticized by civil rights groups for undermining efforts to combat AIDS and other sexually transmitted infections.

Under the new policy announced Monday, officers may continue to seize condoms as evidence in sex-trafficking and promotion of prostitution cases, but they will not use them in support of prostitution cases. Critics had said the previous policy amounted to police harassment, and noted that New York City spends more than $1 million a year to distribute free condoms.

“The NYPD heard from community health advocates and took a serious look at making changes to our current policy as it relates to our broader public safety mission,” Police Commissioner William Bratton said in announcing the new policy.

For decades, police in New York and elsewhere had confiscated condoms from sex work suspects ostensibly for them to be used as evidence in criminal trials, even though the overwhelming majority of prostitution cases never go to trial.

“A policy that inhibits people from safe sex is a mistake and dangerous,” Mayor Bill de Blasio said Monday at an unrelated event in Queens. “And there are a number of ways you can go about putting together evidence” without condoms, he said.

Civil rights groups and advocates for sex workers and gay, lesbian and transgender young people commended the department’s new policy, but want a ban on the use of condoms as evidence in sex trafficking and promotion of prostitution cases too.

They argue that even under the new policy police may continue to seize condoms from sex workers and teen runaways under the pretense of investigating pimps and traffickers, and that traffickers could punish sex workers who carry condoms because they fear they’ll be used against them.

“This is a step in the right direction but it doesn’t go far enough and creates a loophole big enough to drive a truck through,” said Andrea Ritchie, a coordinator at Streetwise and Safe, a New York City-based group that has long opposed the department’s previous policy. “We will be monitoring the NYPD carefully to see how they implement this policy.”

Measures to formally abolish the practice across New York state have been introduced in the Legislature for nearly two decades and last year passed the Assembly. Similar legislation has been introduced in California.

Corinne Carey, of the New York Civil Liberties Union, said lawmakers should go further than the NYPD by prohibiting law enforcement from seizing condoms as evidence of sex trafficking and other prostitution-related crimes.

“This (the new policy) is really too limited for us to be happy about it,” she said. “The message needs to be that condoms aren’t criminal.”

A 2010 study by the city’s Department of Health surveyed more than 60 sex workers and found that more than half had condoms confiscated by police. Nearly a third said they had at times not carried condoms because they feared getting into trouble.

Two years later, the group Human Rights Watch interviewed 197 sex workers in New York, Washington, D.C., Los Angeles and San Francisco and found that many limited the number of condoms they carried or went without because they feared police attention. The report concluded that transgender teens, street-level sex workers and immigrants were especially targeted because of their appearance or behavior.

Prosecutors in Brooklyn, Manhattan and Long Island’s Nassau County and in San Francisco stopped using condoms as evidence in prostitution cases last year.

The New York Police Department makes about 2,500 prostitution arrests a year.

One respondent in the Human Rights Watch study, Brooklyn sex worker Pam G., told the researchers she has had condoms taken by police.

“The cops say, ‘What are you carrying all those condoms for? We could arrest you just for this,’” she said. “It happens all the time around here. I may be carrying eight condoms. If you have more than three or four, they will take them.”

Simple math illustrates the challenge facing U.S. taxpayers, consumers and insurers following the launch late last year of two expensive new drugs to treat hepatitis C.

If all 3 million people estimated to be infected with the virus in America are treated at an average cost of $100,000 each, the amount the U.S. spends on prescription drugs would double, from about $300 billion in one year to more than $600 billion.

That prospect has inspired an unusually blunt public debate: Should expensive treatments – one new drug costs $1,000 a pill — be limited only to the sickest patients, or is it appropriate to treat all who want the drugs immediately? And should those in taxpayer-funded programs have the same access?

“These are, at their core, ethical fights,” said Arthur Caplan, director of the division of bioethics at New York University Langone Medical Center.

The issues are especially contentious because the drugs, Sovaldi by Gilead Sciences and Olysio by Janssen Therapeutics, are an advance in treatment and offer a cure for many people; they are not just medicines that ease symptoms or extend life for a few months.

“The more definitive the cure, the closer we are to asking, ‘What’s the value of a human life?’” said Tony Keck, director of Medicaid in South Carolina where the treatments are being covered case by case.

This is not an isolated predicament. Already, specialty drugs account for less than 1 percent of all prescriptions but more than a quarter of spending. Other high-cost specialty medicines in the pipeline include treatments for high cholesterol and diabetes, which affect tens of millions of people.

“This is the tip of the iceberg,” said Steven Pearson, president of the nonprofit Institute for Clinical and Economic Review, which analyzes the effectiveness of new treatments. “We have about a year or two as a country to sort this out” before more specialty drugs hit the market.

Different Groups, Different Guidelines

For now, though, the question is how broadly public and private insurers will make the hepatitis drugs available.

As they draft their guidelines, many are considering recommendations from expert groups.

“We just put down the best regimen for the individual,” said Gary Davis, a hepatitis expert and panel co-chairman. “We recognize cost issues are really important, but we are clinicians, not the people who should be addressing that.”

But in April, a panel for the Department of Veterans Affairs— none of whose members reported financial ties with the drug industry —offered a different take: It suggested doctors use the drugs mostly for patients with advanced liver disease, including those awaiting transplants. The VA panel said most patients at earlier stages of the disease should consider waiting for drugs now in development that may prove superior. Analysts expect those drugs to be available within the next year or two.

Sovaldi and Olysio “should be used because they have a high clinical benefit, but not everyone needs to be treated immediately,” said Rena Fox, a VA panelist and professor of medicine at the University of California at San Francisco.

They noted that drugs expected out as early as this fall may prove superior because they will not require the use of interferon, a drug that can have debilitating side effects.

Even so, Ryan Clary, executive director of the National Viral Hepatitis Roundtable, a patient group, lambastes such limits
as “absolutely, rationing.” His group, which receives funding from the drug industry, wants the treatments to be broadly available.

“There are plenty of reasons a person with hepatitis C would like to have the virus out of their body,” he said. “To say, ‘We want you to hold off until you start to get sick,’ is really problematic.”

Gilead Defends ‘Fair’ Price

The hepatitis drugs are not the most expensive drugs on the market, but their prices are of concern because of the large number of people infected with the virus.

Sovaldi costs $84,000 for a 12-week treatment, although some patients will need to take the drugs for 24 weeks. Olysio is about $66,000 for a 12-week treatment, but is approved for fewer types of patients. Other drugs must often be used with the two new products, adding to the cost.

Drugmakers defend the pricing, saying the treatments are curative, and can prevent the need for other costly care, such as liver transplants.

“Gilead believes that the price of Sovaldi is fair based on the value it represents to a larger number of patients,” Gilead spokeswoman Michele Rest said.

Insurers and consumer advocates hope increased competition will result in lower prices for the next round of hepatitis C drugs expected out later this year and next, but that is by no means guaranteed.

More Hepatitis Patients Expected

No one expects all those infected with the hepatitis C virus to seek treatment: At present, most people with the virus don’t even know they have it, one of the reasons why fewer than 20 percent have sought treatment with the older regimens.

More patients are expected to be diagnosed, however, as health officials urge baby boomers to get tested. The blood-borne virus is spread mainly by intravenous drug use, although many people were unknowingly infected by poorly sterilized medical equipment and blood transfusions before widespread screening of the blood supply began in 1992.

Policymakers say the cost of treating even half of those infected could raise premiums for everyone with private insurance.

In an earnings call last month, UnitedHealthcare, one of the nation’s largest insurers, said it spent $100 million on hepatitis
C treatments in the first quarter of the year, far more than it had expected.

Like many private insurers, United covers the drug broadly, following medical societies’ recommendations, although some of its plans may charge patients higher co-payments for the drugs.

Another firm, MedImpact, which oversees pharmacy benefits for tens of thousands of people, saw its spending on hepatitis treatments nearly double this year to $37 million, when compared with the first quarter of 2013.

A Dilemma For Medicaid Programs

Because many of those infected are low-income, in prison or baby boomers, the spending is expected to fall hardest on taxpayer-funded health programs such as Medicaid and Medicare.

This “has the potential to throw a wrench into short-term state budgets,” said Matt Salo, executive director of the National Association of Medicaid Directors.

Medicaid programs, for the most part, are still setting coverage rules, relying on their own panels to review medical studies and recommendations from other groups. In Texas and elsewhere, Medicaid will not cover the drugs at all until those review panels issue guidance.

Other states have completed initial reviews. Florida, for example, placed Sovaldi on its preferred drug list, while Pennsylvania officials will seek public comment on draft rules requiring patients to show some liver damage, get a prescription from a specialist and have their treatment overseen by a case manager to qualify.

In an era of limited resources, the prices pose a particular dilemma for public programs.

“For the price of Sovaldi for one patient, we could provide health insurance through Medicaid for [up to] 26 people for an entire year,” said J. Mario Molina, chief executive of Molina Healthcare with Medicaid plans in 10 states.

“There’s no question it is a very efficacious drug. But it’s just who gets it and when.”

Molina is holding off on offering the drugs in many cases while it seeks answers from state officials about whether they will cover this year’s costs, which were not built into Molina’s contracts. Other Medicaid insurers are seeking similar assurances from state officials.

Is There Harm In Waiting?

Waiting is not unusual for hepatitis patients. In the past, many chose to delay treatment because the available options were problematic. Older regimens were complex to administer, had to be taken for longer periods and were less effective. So there is pent-up demand for the new drugs, although some may still want to wait for interferon-free alternatives.

Adding to the controversy over the prices of Sovaldi and Olysio, the panel convened by the two medical societies had recommended that some patients who can’t take interferon be treated with a combination of those two drugs — nearly doubling the cost. That combination was not approved by the Food and Drug Administration, although doctors can still prescribe it. The combination has been tested on only a small sample of patients.
“There’s a big temptation to treat them now,” said Fox of the VA panel. “But we have to remain evidence-based.”

With a slow-progressing disease, waiting until those studies are completed — or until there are other interferon-free regimens — might be a good option for such patients, Fox said.

For every 100 patients chronically infected with the virus, 60 to 70 will develop liver disease, according to projections cited in a report prepared for the California Technology Assessment Forum. Over 20 years or more, an expected 5 to 20 will develop cirrhosis, which is irreversible scarring of the liver. One to five of those would die of cirrhosis or liver cancer.

Asking Patients To Delay Treatment

Experts note that it’s highly unusual to ask patients to wait for a treatment already on the market.

“When you think of diabetes, high blood pressure, cancer or other conditions, there aren’t many where there is a serious discussion of whether or not treatment should be given”— and usually that’s because of a safety issue, said David Thomas, another member of the medical societies’ panel.

“There’s no safety issue, so ‘Does it cost too much’ is the only question left,” said Thomas, director of the infectious diseases division at Johns Hopkins University School of Medicine.

Speaking for himself, rather than the panel, he said that cost questions need to be debated “with all the vested parties at the table, not just the doctor sitting down with a patient.”

Yet doctors are increasingly being asked to think about cost — at the risk of a loss of trust by their patients, said NYU’S Caplan.

“That’s a shot directly across the bow of the traditional notion that my physician is my advocate, that they look out for me … and don’t worry about the national debt or the fact that Medicare will go broke in 20 years,” he said. “They worry about me.”

According to the Centers for Disease Control and Prevention (CDC), an estimated 25% of people with HIV also have hepatitis C (HCV for short), a viral infection that can cause chronic liver disease and liver cancer. An estimated 75% of people living with hepatitis C in the United States don’t know it, says the CDC.

Hepatitis Awareness Month is designed to change that statistic and increase understanding, testing, and treatment of viral hepatitis, including HCV and hepatitis A and B. A project of the CDC, Hepatitis Awareness Month provides an opportunity to get tested for viral hepatitis and learn how to avoid and treat these infections.

Use the resources below to find a testing location and get the information you need to prevent hepatitis infection and manage your own health.

Resources for Your Health: Hepatitis

Hepatitis Risk Assessment: Use the CDC’s anonymous self-assessment tool to evaluate your own risk factors for viral hepatitis and get personalized recommendations for hepatitis testing and vaccination.

Help-4-Hep: This toll-free, peer-to-peer helpline can answer your questions about testing and treatment for hepatitis C. Call 877?HELP?4?HEP (877?435?7443) Monday through Friday, 9:00 a.m. to 7:00 p.m. EST, or use the site’s “click to call” function to connect with a peer counselor.

The Iowa legislature has voted to ease and even erase some of the current penalties for those found guilty of transmitting HIV, the virus which causes AIDS. The House gave final approval to the bill early this morning with a 98-0 vote. Representative Beth Wessel-Kroeschell, a Democrat from Ames, celebrated the move.

“This is definitely a positive step towards justice for a number of people who have been suffering under the draconian law that we have and I truly appreciate the step that we are taking,” she said.

Under current law, anyone engaging in activity with any potential to transmit the virus can be found guilty of a Class B felony and sentenced to 25 years in prison, regardless of whether the person intended to infect another person and even if the disease was not transmitted. If this new bill becomes law, someone with AIDS who is under the care of a doctor and following prevention guidelines could be shielded from prosecution.

The bill passed the Iowa Senate in late February on a 48-0 vote. It now goes to Governor Branstad for his review. The proposed Contagious or Infectious Disease Transmission Act would allow people who intentionally try to transmit diseases like HIV, Hepatitis C and tuberculosis to others to be charged with a crime.

ALBANY, N.Y. (AP) — New York City spends more than a million dollars every year to distribute free condoms to combat unintended pregnancies and diseases such as AIDS. Yet city police are allowed to confiscate those very condoms as evidence of prostitution.

That conflict is behind the latest legislative proposal to make New York the first state to prohibit condoms – specifically the existence of multiple condoms – from being used as evidence in prostitution cases, a widespread practice that advocates say undermines decades of public health goals.

“There may be no actual evidence, and the condom is their only way to trying to prove it,” said Hawk Kinkaid, a former male escort who now advocates on their behalf in New York City. “The fear that this will be used against you – it prevents people from being able to protect themselves.”

The practice has come under criticism across the country, with prosecutors in San Francisco, Brooklyn and Nassau County in suburban New York City announcing last year they will no longer use condoms as evidence in prostitution cases.

Nassau County District Attorney Kathleen Rice said she decided the benefits of condoms as evidence don’t outweigh the public health impact. Most prostitution cases don’t go to trial, and trafficking cases typically require much greater evidence.

“Sex workers are more likely victims than they are criminals, and condom evidence was rarely of any value to a prosecution,” Rice said. “If you need that condom so badly in the case against a trafficker, then you don’t have a good case.”

Legislation to formally abolish the practice across New York state has so far fallen flat. The New York Police Department, which makes about 2,500 prostitution arrests a year, has long opposed the bill but said Friday it was taking a look at its policy of using condoms as evidence.

A 2010 study by the New York City Department of Health surveyed more than 60 sex workers and found that more than half had had condoms confiscated by police. Nearly a third said they had at times not carried condoms because they feared getting into trouble.

Two years later, the group Human Rights Watch interviewed 197 sex workers in New York, Washington, D.C., Los Angeles and San Francisco and found that many limited the number of condoms they carried – or went without – because they feared police attention. The report concluded that transgender teens, street-level sex workers and immigrants were especially targeted because of their appearance or behavior.

One respondent, a Los Angeles sex worker identified as Carol F., said there were times when she used a plastic bag in place of a condom because she was afraid of being caught with one.

“The cops say, `What are you carrying all those condoms for? We could arrest you just for this,’” a Brooklyn sex worker identified as Pam G. told the researchers. “It happens all the time around here. I may be carrying eight condoms. If you have more than three or four, they will take them.”

J Starks works with a health care organization in the Bronx that distributes condoms and offers HIV tests to sex workers. He said he has seen police search women and confiscate condoms.

“People need condoms. I say, `Take a handful. Take as many as you want,’” he said.

The New York legislation passed the Assembly last year, and advocates are optimistic the Senate will follow suit soon after it reconvenes this month. A spokesman for the Senate’s Republican leaders said the bill is under consideration.

“Sex workers are not a politically appealing constituency to most lawmakers,” said Assemblyman Richard Gottfried, a Manhattan Democrat who has supported the legislation for several years.

The NYPD is reviewing the legislation, as well as its condom policy, according to a statement Friday.

In Washington, a rumor spread among sex workers that police could arrest anyone carrying more than three condoms. Advocates for transgender youth and sex workers worked with law enforcement to clarify the policy, and informational cards were distributed in the community to make it clear that it wasn’t a crime to carry any number of condoms.

“There is no three-condom rule,” the cards read.

“The presence of a condom doesn’t tell you anything about what is happening with a person,” said Darby Hickey, an advocate for sex workers in Washington who was part of the effort to change the policy. “It’s really just the tip of the iceberg of the way in which we as a society treat people in the sex trade – or people we presume are involved.”

One night after midnight in 2012, Deon Haywood was sitting at home, in New Orleans, watching TV and having a drink, when she got a phone call. The owner of her office building was on the line.

“There’s been a fire,” he said.

Haywood ran out to her car and drove to North Jefferson Davis Parkway, to the stout gray building that housed Women with a Vision, a community nonprofit she runs, which does H.I.V.-prevention work and other forms of advocacy geared toward women of color. In Louisiana, the death rate from AIDS is nearly twice the national average. Women with a Vision, founded in 1991, survived Hurricane Katrina, and kept pursuing what public-health workers term “harm reduction” long after many AIDS-minded funders moved their money abroad. Haywood and her staff stashed condoms, sex-education materials, and other work supplies at their office, although it’s not where they spent most of their time—much of their real work takes place in the streets, through outreach and education. Now, as Haywood pulled up, it wasn’t clear how much of the office would be left.

What she found at the scene, still smoldering, had the potential markings of arson. The flames had skipped the steep gray staircase, and climbed their way along the walls of the outreach room, where, Haywood says, various reproductive-health models had been removed from a closet, stacked in a pile, and set ablaze. Police escorted Haywood through the still warm rooms, which appeared to have been ransacked. She felt dazed. The walls looked blistered and brown; a ceiling fan hung with only two of its five blades left, both drooping like a sad mustache. Haywood is still trying to make sense of the idea that someone could have set the fire deliberately. “You would target our outreach room?” she asked. “You would stack our breast models, our reproductive models, and burn them? You would pile up all of the posters that had to do with activism and women’s health, and burn them?”

The New Orleans Fire Department reportedly issued a statement noting that the remains of the office showed signs of arson: the fire had multiple points of origin, and it looked as though an accelerant had been used, though no suspect was ever formally identified. In time, the building’s scorched rooms came to reflect the broader uncertainty facing groups like Haywood’s, which rush to do triage amid very real aggressions. Haywood is up against some daunting statistics. The American South has less than a third of the country’s population, but in 2010 it accounted for nearly half of the thirty-three thousand new AIDS diagnoses nationwide. African-Americans made up around twelve per cent of the national population that same year, according to the Centers for Disease Control and Prevention, but accounted for an astounding forty-four per cent of all new H.I.V. infections among adults and adolescents. And an alarming nine out of the ten U.S. states with the highest AIDS-fatality rates are in the South. So what’s going on?

* *

One of the strangest things about the H.I.V. epidemic in the Deep South—from Louisiana to Alabama to Mississippi—is how easily most Americans have elided it, choosing instead to imagine that the disease is now an out-there, elsewhere epidemic. It’s a plague from some anterior time, some exterior continent, something our kids will read about in books or that we glimpse as history in the movie “Dallas Buyers Club.” Only recently, in the face of unrelenting statistics about the convergence of H.I.V./AIDS rates in the Deep South with almost every other relevant public-health risk—from obesity to heart disease and diabetes—have many of the mega-funders taken a different tack. They are learning that the people doing the grunt work of prevention, education, and treatment often do so in an environment of fierce hardships, the most obvious of which is a lack of funding.

That’s why Deon Haywood came to New York last week, wheeling her well-travelled black suitcase, with “LOVE LOVE LOVE” etched in pink across it, into the office of the Elton John AIDS Foundation, in SoHo. The foundation has become a major supporter of Women with a Vision; after the fire, it rushed a grant to help the group rebuild. (Many in the community lent aid, too, and local and national reporters paid attention.) Before New York, Haywood had, in recent weeks, wheeled her way through Oklahoma and Philadelphia, meeting with funders and speaking to conference crowds. “Elton is really passionate about this,” one of the foundation’s employees told me, sharing its road map for “a very aggressive” approach to addressing the domestic intersection of AIDS and various forms of stigma and inequality.

Other prominent groups, too, have been making an effort to turn the H.I.V./AIDS-prevention conversation inward. Last month, the Clinton Global Initiative University hosted a panel on prevention strategies. It was moderated by Lisa Biagiotti, a filmmaker whose recent documentary on the epidemic, “deepsouth,” burrows into the crevices of culture, where statistics can’t quite creep. To shoot the film, Biagiotti spent more than two years driving some thirteen thousand miles and interviewing four hundred-plus people. The lush tale that results centers on a small handful of them, including a gentle-minded H.I.V.-positive college student and a Birmingham pastor who preaches that AIDS is “God’s curse to homosexual life.” She’s screened the film nationwide, using it as something of a stethoscope—a public-health tool as well as a conversation starter in places where shame often reigns.

One resonant scene in “deepsouth” examines the stigma as a twenty-first-century problem in the particular religious-political-cultural brew of the region. A young man sits in a small group-discussion circle at a retreat for H.I.V.-positive individuals in rural Louisiana. He looks out and says, “I’m not very close to a lot of people because I think, you know, like, maybe I’m contaminated,” to which the organizer replies, “You’re not contaminated, baby, everybody else around you is contaminated.”

* *

Once, shortly before Hurricane Katrina, Deon Haywood found herself speaking to a coffee-and-pearls crowd in St. Tammany Parish, Louisiana. As she recalls it, the wealthy white retirees who had agreed to hear her speak were considering donating to Women with a Vision, or maybe becoming volunteers. Haywood gave her usual spiel about the epidemic, and about how she saw it as intertwined with other social measures of well-being; about access to health care, and safe housing, and freedom from domestic violence; about the things people do for survival when they are broke and desperate. The women stared back at her. Their expressions were “so flat,” Haywood recalls.

“One of them was, like, ‘Why are we discussing this?’?” Haywood says. Others piled on, pointing out that if a woman has sex for money she takes on certain risks. “This has nothing to do with me,” Haywood recalls one of the women saying. “I’m married to my husband.”

Haywood said, “Well, I’ll tell you this. Black men aren’t buying sex where I work, they’re not buying it in their neighborhood like that. What I do see in this area, where sex workers are, is so many white men coming from the Central Business District in their Range Rovers or their Mercedeses. And that blow job? That could be one of your husbands. So you may think it doesn’t affect you, but, hey, it could.”

Suddenly, the women were leaning in, curious. “They were, like, ‘I’ve never thought about that,’?” she told me now, tilting forward in a blue plastic chair at the Elton John AIDS Foundation. Behind her was a framed photograph of the singer smiling and beside an orchid. That conversation, to Haywood, had been a moment of breaking through, of moving across thresholds, that seems increasingly rare.

* *

So back to why: Why the South, and why a plague that some thought we had under control? “If you think about where the rates are highest, it’s in the most conservative places,” Haywood told me. “It’s where the conversation is not being had, and where shame and stigma exist because of religion, because of culture, because of racism, because of homophobia—you name it, it exists for those reasons.”

The vast overlap between the social ailments of the South (like poverty) and the physiological ones (like disease) is not merely theoretical. “When you think about the South, we have the highest rates of H.I.V.,” Haywood continued. “But we also have the highest incarceration rates, and we don’t have comprehensive sex education—we have abstinence-only education.” Nationally, one in seven individuals living with H.I.V. passes through the correctional system annually, which tends to amplify their risk factors. Louisiana has the highest incarceration rate not only in the country but in the world. It’s another reason that Haywood’s group has become increasingly involved in broader policy work. (Their stated mission is “to improve the lives of marginalized women, their families, and communities by addressing the social conditions that hinder their health and well-being.”)

Biagiotti’s film reaches parallel conclusions. “H.I.V. is really an indicator, or a symptom, of so many other social issues,” she told me not long ago. “H.I.V. has been my G.P.S. to some of the most fragile places in America.” In one of her film’s more pedagogical moments, she follows Kathie Hiers, the C.E.O. of AIDS Alabama, who spends much of the year on the road, lobbying for increased research and prevention funding for her state. Hiers explains the region’s epidemic in three simple sentences.

“We don’t have high-paid lobbyists,” she begins. “We don’t have a lot of money. Here’s some of the things we do have: the most people living with H.I.V. and AIDS, the most poverty, the most sexually transmitted infections, the most people without health insurance, the most vulnerable populations, the fastest-growing epidemic, the least access to health care, the highest mortality rates, and the least resources to deal with this crisis.”

* *

Deon Haywood’s mother sent her a text message recently, when Haywood hadn’t called in a day or two, asking if everything was O.K. “I know you’re an adult,” the text read, as she recalls it. “But the more public you are the more I worry.” Her mother’s fears are hard to dismiss. It’s an odd thing to reckon with—the idea that, in 2014, domestic efforts to address a public-health problem could put a person at risk. “A little bitter” is how Haywood describes the feeling. Losing her former office after Hurricane Katrina knocked Haywood off balance for a while; Katrina in itself, she said, already gave everyone a certain P.T.S.D.

The parallels between the crises resonate. The most enduring images of the storm, perhaps, are those of the families, in neighborhoods that were mostly black and poor, standing on rooftops waving American flags, in search of aid as the flooding mounted—some having scribbled “The Water Is Rising” in chalk. Most of the people of means had already got onto the highway, or into a lifeboat, or on an airlift. Not long ago, when it came to H.I.V./AIDS, a broad swath of Americans stood together on that other hell-swept roof; then, slowly but surely, many of those with the resources to catch a ride or a break did, mercifully, and the disease was slowly brought under control. But, when Deon Haywood and her colleagues work the streets of New Orleans—“My job is not to save, it’s to assist,” she says—they’re reminded daily of how many people still stand on the roof as the epidemic quietly rages and the water creeps up—another disaster that is natural-born and yet, in countless ways, man-made.

Treating hepatitis C with effective new direct-acting antivirals (DAAs) could dramatically reduce hepatitis C virus transmission, according to several presentations at the European Association for the Study of the Liver (EASL) International Liver Congress last week in London. But making this work on a large scale will require efforts to scale up HCV screening and bring down drug costs.

It was not until 30 years into the AIDS epidemic that the HPTN 052 study showed that early antiretroviral therapy reduced HIV transmission in serodiscordant heterosexual couples by 96%. More recently, researchers with the PARTNERS study reported at last month’s Retrovirus conference that no transmissions occurred among mixed-status heterosexual couples that did not use condoms if the positive partner was on HIV treatment with suppressed viral load.

But lessons learned from HIV have enabled faster progression of advances in the hepatitis C arena. Next-generation DAAs combined in interferon-free regimens are now routinely curing 90% to 100% of clinical trial participants, including traditionally difficult-to-treat groups such as people with liver cirrhosis or HIV/HCV coinfection.

Given these promising results, researchers are asking whether prompt and widespread treatment could reduce HCV transmission, especially among groups with high incidence (new infections) and prevalence (total existing infections) rates such as people who inject drugs (PWID).

Traditionally, because injected interferon-based therapy was long (24 to 48 weeks) and arduous and cured less than half of treated patients, hepatitis C treatment was recommended only for people with moderate or worse liver disease. But with new interferon-free regimens that are well tolerated and can cure most people in as little as 6 or 8 weeks, a growing number of experts think all people with HCV should be eligible for treatment.

The opening day of the Liver Congress featured a joint workshop by EASL and the International Network on Hepatitis in Substance Users that included a presentation by Gregory Dore on elimination of hepatitis C among PWID through treatment as prevention. (Dore and colleagues published a paper on the same topic in the October 1, 2013, issue of Clinical Infectious Diseases.)

Dore, with the Kirby Institute at the University of New South Wales in Sydney, defined elimination as reduction in the incidence of infection to zero in a defined geographical area—but requiring continued measures to prevent re-establishment of transmission—versus eradication, or complete and permanent reduction of an infectious disease to zero new cases worldwide (as was accomplished for smallpox).

Since 60% of all existing HCV infections are among current and former injection drug users, and 80% of new HCV infections occur among current active injectors, controlling transmission in this group would have a major effect on overall incidence and prevalence.

The success of treatment-as-prevention for hepatitis C would depend on a number of parameters, including chronic hepatitis C prevalence and rate of treatment uptake in a local PWID population. These numbers can vary widely. Chronic hepatitis C prevalence, for example, ranges from 25% in Edinburgh to 50% in Melbourne to 65% in Vancouver.

In a poster at the Liver Congress (abstract P1289) and at a symposium sponsored by the European Liver Patients Association (ELPA), Natasha Martin from the University of Bristol described research she did with Dore and others modeling scale-up of treatment and harm reduction efforts such as needle exchange and opiate substitution in the age of direct-acting antivirals (published in the November 2013 issue of Hepatology).

At the current level of treatment uptake, new drugs with a cure rate of 90% could reduce prevalence by about 25% in Edinburgh in 15 years, but would only have a minimal impact in Melbourne and Vancouver. Scaling up treatment coverage to 15 or 76 patients per 1,000 PWID in the population, respectively, could cut prevalence in half in Edinburgh and Vancouver within 15 years. If harm reduction coverage rose to 80%, however, treating 46 out of 1,000 PWID in a high-prevalence city like Vancouver could reduce prevalence by 75% over 10 years.

“Individual-level benefit favors treating the sickest patients first,” Martin explained. “But on a population level, treating someone earlier may not immediately benefit them, but could prevent many new infections.”

But the cost of the next-generation DAAs is likely to be a barrier. At existing HCV drug costs, halving chronic hepatitis C prevalence would require estimated annual treatment budgets of $3 million in Edinburgh and $50 million in Vancouver, Martin’s team concluded.

The two next-generation DAAs approved so far—Gilead Sciences’ sofosbuvir (Sovaldi) and Janssen’s simeprevir (Olysio)—run $84,000 and $66,000, respectively, for a 12-week course. Private insurers in the U.S. and national health programs in Europe will get discounts, but many public health experts say costs will still be too high given the large number of people with hepatitis C and the high proportion who are socioeconomically disadvantaged. Forthcoming new drugs from AbbVie, Bristol-Myers Squibb, and Merck may be priced lower to compete with the frontrunners, but it is unclear by how much.

Dramatic reductions in hepatitis C prevalence among PWID can be achieved using a combination of expanded harm reduction and increased treatment in the coming interferon-free era, the researchers concluded, but treatment costs could limit scale-up. “This strategy is achievable, but I don’t know if it’s affordable at current prices,” Martin said.

In a related study presented in a session on public health, Anthony Cousien and colleagues (abstract O89) used mathematical modeling to estimate the impact of treatment on HCV rates among injection drug users in France, given a baseline hepatitis C prevalence of about 40%.

The researchers looked at several scenarios, including different levels of treatment uptake, varying numbers of needle-sharing partners, and cure rates ranging from about 70% using the old standard of care to 90% using next-generation interferon-free regimens.

Increased testing, earlier diagnosis, starting treatment sooner, drugs with higher cure rates, and improved treatment adherence all played a role in reducing hepatitis C incidence and prevalence among drug injectors. But a combined strategy of increased HCV screening and diagnosis (within six months of infection), improved linkage to care, and earlier treatment with new interferon-free therapies worked best, potentially reducing prevalence to 10% over the next 10 years, as well as decreasing the burden of advanced liver disease by around 25% over 40 years.

Thomas Berg from University Hospital Leipzig, also speaking at the ELPA symposium, underlined the importance of increased outreach and education to encourage increased diagnosis.

His estimates indicate that treating 20% of people with hepatitis C worldwide using drugs with a 50% cure rate would reduce prevalence by 10%. Even if the cure rate were 100%—nearly achievable with some of the new DAA combos—prevalence would fall by just 20%. “Only if you increase diagnosis will a higher cure rate lead to a large reduction in prevalence,” he concluded. “There is a much higher reduction in mortality if you increase screening.”

“Cost is the biggest obstacle of all,” said ELPA’s Ingo van Thiel, summing up the symposium. “Lowering the price [of treatment] will increase the political will for screening. [At current prices,] many governments are afraid to create new patients.”

Health and Human Secretary Kathleen Sebelius resigned yesterday, after leading President Obama’s successful efforts to get 7.5 million Americans signed up for private health insurance since last fall. At least 3 million more have signed up for expanded Medicaid coverage. This is an amazing accomplishment. Many demographic groups are disproportionately benefiting from this expansion of insurance coverage and access to health care, including LGBT people and people living with HIV, who are much less likely to have health insurance.

Sebelius became a lightning rod for criticism by conservative opponents of the Affordable Care Act, especially after the botched roll-out of healthcare.gov last fall. However, despite these problems, overall, Secretary Sebelius’ record is one of great accomplishment. As researchers, providers, and policy advocates for LGBT health and HIV issues, we here at The Fenway Institute are very grateful to Secretary Sebelius for her incredible leadership on our issues. We know many other members of our communities agree. Here are just a few things that happened under Secretary Sebelius’ five years at the helm at HHS:

• Healthy People 2020: In our nation’s blueprint for improving the health of Americans over the next decade, the federal government committed, for the first time, to ending LGBT health disparities, such as lower rates of Pap tests and mammography for lesbians. “Healthy People” addresses social determinants that affect the health of LGBT people, including “oppression and discrimination.”

• Institute of Medicine Report on LGBT Health: This groundbreaking report reviewed the current state of LGBT health research, called for more data collection, and urged the National Institutes of Health (NIH) to develop a research agenda for LGBT health. In 2013 the NIH released its initial plan to advance LGBT health research and is funding more work in this area.

• Data collection: As authorized by Section 4302 of the Affordable Care Act (ACA), in 2011 Secretary Sebelius called for more data collection on LGBT health disparities. A sexual orientation question is now being asked on the National Health Interview Survey (NHIS). HHS is also cognitively testing a gender identity question to be added to NHIS in the future. Sexual orientation questions are being added to the National Survey on Drug Use and Health, and the Centers for Disease Control and Prevention (CDC) are more actively promoting sexual orientation and gender identity (SO/GI) questions for state behavioral risk factor surveys. The Office of the National Coordinator for Health Information Technology is also taking steps to promote SO/GI data collection in health-care settings through its “meaningful use” program for electronic health records.

• The Affordable Care Act: Same-sex couples are insured at rates much lower than heterosexual couples. Many single LGBT people are uninsured. In 2012 only 13 percent of people living with HIV in the U.S. had private insurance; 25 percent had no insurance at all. Lesbians and transgender people are less likely to seek preventive health care, partly due to lack of insurance and partly due to a dearth of culturally competent providers. The ACA eliminates the ability of insurance companies to deny coverage based on preexisting conditions, including HIV. It also eliminates annual and lifetime spending caps. ACA regulations outlaw discrimination against LGBT people through Qualified Health Plans offered on the state and federal insurance exchanges. While a number of issues still need to be addressed — in particular high copays for antiretroviral medications — by and large the ACA will benefit LGBT people and people living with HIV, more than half of whom are gay and bisexual men and transgender women.

• Youth and elder advances: The Substance Abuse and Mental Health Services Agency is working with researcher Caitlin Ryan to promote family acceptance of LGBT youth as a resiliency factor that can reduce health risk behaviors and mental health issues. The Administration on Aging has authorized state elder agencies to designate LGBT elders as a population of “greatest social need,” which can enable Older Americans Act funding for service provider training, targeted services such as congregate meals, and research on LGBT elder needs.

• HIV/AIDS: HHS has worked closely with other federal agencies to implement the nation’s first-ever National HIV/AIDS Strategy. While we have seen improvements in linkage to care and viral suppression rates, new infections are still increasing among gay and bisexual men, especially black gay men. CDC has started gathering data on gender identity, and HRSA, the HIV care agency, has prioritized improving treatment outcomes among transgender women. Advances in biomedical prevention, such as pre-exposure prophylaxis (PrEP), have been rolled out in recent years and offer hope.

• The HHSLGBT Issues Working Group: This group, led by HHS Assistant Secretary Dr. Howard Koh, Assistant Secretary for Aging Kathy Greeley, Deputy General Counsel Ken Choe, and LGBT Outreach Director Dr. Matt Heinz, will continue to move forward the critical work Secretary Sebelius has led since 2009.

There are still many things that HHS could do to advance better health care for LGBT people. For example, designating LGBT people as a “medically underserved population” and as a “health professional shortage area population” could increase resources for training providers in LGBT health. But Secretary Sebelius’ accomplishments on LGBT health, working closely with President Obama and other leaders throughout the federal government, are really quite remarkable. Thank you, Secretary Sebelius. Your legacy will be the improved health of all Americans, and especially LGBT Americans.

Sean Cahill is Director of Health Policy Research at The Fenway Institute and Adjunct Assistant Professor of Public Administration at New York University’s Wagner School.

In the last twelve months PrEP, the HIV-prevention strategy that relies on a medication called Truvada, has gotten the attention of the national news media.

And, as well as it should.

It’s arguably the most important breakthrough in HIV medicine since the mid-1990s, when HIV was made no longer a death sentence, thanks to retro-antivirals and protease inhibitors.

But each time a major news organization takes on this important subject, it calls upon one individual who’s on a crusade to snuff out PrEP: Michael Weinstein, president of the AIDS Healthcare Foundation.

Mr. Weinstein knows how to portray PrEP, along with gay men, in the most unattractive light. This month he told the Associated Press, ”Let’s be honest: It’s [Truvada] a party drug.” In Mr. Weinsteing’s eyes, PrEP isn’t about public health. It’s just a highly expensive way for those horny, irresponsible gays to go back to their barebacking-gone-wild.

It would be one thing if this were a talking point of a crackpot on The 700 Club. Hell, Mr. Weinstein’s words could be adapted nicely for a poster for the Westboro Baptist Church. But this man, who earns, according the LA Times, around $390,000 per year, leads an organization that’s the largest provider of HIV/AIDS services in the United States. Yet his views are so out of line with scientific reality that, before approving PrEP, the head of the Centers for Disease Control refused to even meet with him.

The truth is this: The latest research shows that people who take PrEP on a daily basis achieve upwards of 90 percent protection from the virus. That’s a conservative estimate. In the largest study to date, not a single person who took PrEP as prescribed became HIV positive.

Instead of trumpeting this amazing news as a game-changer in efforts to prevent around 50,000 new infections each year, Mr. Weinstein tells ABC News, “I think it [PrEP] will be a catastrophe for HIV prevention in this country,”

In this man’s prurient imagination, gays are too busy enjoying their bareback orgies to be trusted with taking a once-daily pill. In his view, gay men using PrEP will stir up a frothy new drug-resistant strain of the virus. What evidence exists that this is a valid scientific concern? None. He has not even credited the fact that this form of prevention might and is being used by responsible gay men regardless of the sexual activity they are engaged in. Mr. Weisnstein’s anti-PrEP position is an extension of his long-standing anti-promiscuity crusade and more importantly his continuation of harmful shame tactics.

It’s now time to for our community to fight back against his shame-on-us rhetoric. It’s time for us to fight back and say, “shame on him.”

As the issue of cost of PrEP, and whether it should be deployed to prevent young people from becoming infected, becomes an important national issue, we need to take Mr. Weinstein and his radical rhetoric out of the national conversation.

He needs to be removed from his post at the AIDS Healthcare Foundation. Immediately.

MICHAELLUCAS is the creator of Lucas Entertainment, one of the largest studios producing all-male erotica. He lives in New York City. This article is the opinion of the writer.

Go to our Speak Up web page, and report any problems you or a client face with new Affordable Care Act health plans, or existing plans.

When you Speak Up, you’ll help thousands of others across the country.

This national project, led by AIDS Foundation of Chicago and the Center for Health Law and Policy Innovation at Harvard Law School, will monitor, catalogue, and analyze the problems experienced by people with HIV in the new system.

Speak Up will identify issues that need to be addressed, bring them to the attention of state and federal policymakers, advocate for change, and report back to the community.

Let your voice be heard. If you can’t get the care you need, Speak Up!

~ ~ ~ ~ ~

About the Project

The HIVHealthReform.org “Speak Up” project will help people living with HIV get the care they need through health care reform. This national project will monitor, catalog, and analyze the problems experienced by people with HIV in the new health care system.

We will identify issues that need to be addressed, bring them to the attention of state and federal regulators and policymakers, advocate for change, and report back to the community. Beyond helping individuals, information collected through this project will ultimately serve the entire HIV community, as it will help educate state and federal officials as they review and refine key aspects of the Affordable Care Act in coming years.

By the San Francisco AIDS Foundation, originally posted on their blog — BETA

For people living with HIV, effective antiretroviral therapy (ART) not only suppresses the virus and protects immune system health but has the added benefit of reducing the risk of transmitting HIV to sex partners. This side benefit, known as “treatment as prevention,” has been established by recent studies with mixed-HIV-status couples.

For example, in the PARTNER study, zero new HIV transmissions occurred through more than 44,000 condomless sex acts within 767 mixed-HIV-status couples in which the HIV-positive partner’s viral load was suppressed below 200 copies/mL, and where the HIV-negative partner did not use PrEP or PEP to prevent infection.

Standard viral load tests look for HIVRNA (genetic material from the virus) in blood, not semen—and the amount of RNA in these two fluids doesn’t always match. And as researchers report in the March 3 online edition of PLoS ONE, not only can individuals with undetectable blood viral load have detectable levels in semen, those levels can change from hour to hour.

Xavier Ferraretto and colleagues from the Bichat-Claude Bernard Hospital in Paris looked for HIVRNA in 306 seminal plasma samples (SPSs) from 88 men enrolled in the hospital’s assisted reproduction program. All participants were on ART and had undetectable blood viral load (defined here as below 50 copies/mL) for more than six months. Semen samples were obtained by masturbation after two to seven days of sexual abstinence, and each man provided, if possible, two samples within a one-hour interval.

The results? “HIV RNA was detected in at least one SPS for 17 patients (19.3%) during the study period, corresponding to 23 SPSs (7.5%).” HIVRNA levels ranged from 200 to 3,000 copies/mL, with a median (middle of the range) of 705 copies/mL.

In addition, researchers analyzed viral load in 129 samples given by the same individuals one hour after their original sample. Of these, 12 (9.3%) showed a different seminal plasma viral load, or spVL: “In 8 cases, a spVL was undetectable in the first [sample] and detectable in the second. In 4 cases, a spVL was first detectable and later undetectable.” In these 12 cases, spVL ranged from 200 to more than 1,000 copies/mL, with a median of 918 copies/mL.

The researchers found no association between detectable spVL and participants’ age, geographic origin, sperm characteristics, CD4 cell count nadir, route of HIV transmission, or co-infection with hepatitis B or C.

Interestingly, more men on protease inhibitor (PI)–based ART had at least one sample with detectable HIVRNA, compared with men taking non-nucleoside reverse transcriptase inhibitors (NNRTIs) and other antiretroviral drugs; however, the association did not reach statistical significance. “The tendency towards a higher risk of a detectable spVL in patients given the PI-containing [ART] regimen compared to a regimen containing an NNRTI might be explained by the poor diffusion of most PIs in the male genital tract,” the researcher team writes.

What do these findings mean for HIV transmission risk? While the results show that viral “shedding” can occur within a one-hour interval among men with undetectable blood viral load, “this timing should not be considered to place individuals at greater risk for HIV transmission than previously reported,” the authors state. They do conclude, however, that the nearly 20% proportion of men with detectable HIVRNA in semen despite stable undetectable blood viral load “should balance messages on the individual risk of HIV transmission through unprotected sex as an exclusive preventive strategy in serodifferent couples with procreation desires.”

That said, no study to date has identified a seminal viral load “threshold” at which HIV transmission becomes likely. Questions clearly remain about the links between HIV viral load, viral load in semen, and risk for HIV transmission in the setting of antiretroviral treatment.

“[T]here’s a big chunk of [today’s] prison population that is involved in nonviolent crimes. And it is having a disabling effect on communities. You have entire populations that are rendered incapable of getting a legitimate job because of a prison record. And it gobbles up a huge amount of resources.” —Barack Obama

“When one in every 31 Americans is under correctional supervision, it’s clear that something is very wrong. The United States stands above all for freedom, and yet we have by far the highest rate of incarceration in the world.” —Newt Gingrich

These statements were made in 2012 and 2013 by President Obama and former House Republican leader Newt Gingrich. While it’s well-known that we incarcerate African-Americans at shockingly disproportionate rates, less well known is the disparate impact on the LGBT community. The recent case of CeCe McDonald has helped bring this discussion to the fore. The transgender and LGBT movements must make this issue a higher priority. The National Center for Transgender Equality (NCTE) hopes to make a contribution to these efforts with our new publication, “Standing with LGBT Prisoners: An Advocate’s Guide to Ending Abuse and Combating Imprisonment.”

A history of systemic bias, abuse, and profiling toward LGBT people by law enforcement has contributed to disproportionate contacts with the justice system. Moreover, while people may find themselves in jail or prison for many reasons, people who are poor are more likely to be imprisoned, and LGBT people are disproportionately poor. It’s therefore not surprising to find that LGBT people are more likely to end up behind bars. While an estimated 4-8 percent of youth are LGBT, a major study found that as many as 13-15 percent of youth in detention are LGBT. According to the National Transgender Discrimination Survey, 16 percent of transgender adults have been in a prison or jail for some reason. This compares with 2.7 percent of all U.S. adults who studies say have been in prison during their lives, and 10.2 percent of all U.S. adults who have ever been under any kind of criminal justice supervision, including probation. Transgender people, especially the poor and trans people of color, report facing harassment, discriminatory arrests, and assault by police at alarming rates.

The Constitution guarantees that people deprived of their liberty must be provided with adequate food, shelter, safety, and medical care, yet these standards are rarely met. LGBT people are especially vulnerable to abuse and mistreatment. More than 200,000 youth and adults are sexually abused in prisons, jails, and juvenile detention facilities each year according to federal estimates. In the same federal survey, prisoners who identified as “non-heterosexual” were three times as likely to report sexual abuse. A study of California prisons found that transgender women in men’s prisons were 13 times as likely to be sexually abused as other prisoners.

LGBT people often face constant humiliation and degradation from staff and prisoners alike. Staff may blame them for their own victimization, claiming they are “flaunting themselves,” and refusing to take reports of abuse seriously. If their vulnerability is recognized at all, it may be by placing them in indefinite solitary confinement, with little or no activity or human contact — conditions that medical experts have found to amount to torture.

Transgender and gender nonconforming people can face additional forms of mistreatment. Most jails still routinely house transgender women with men, a virtual invitation for abuse. Trans men and women alike face constant denial of their identity, including denial of appropriate undergarments to punishing them for their hair length of beard growth. In addition, some facilities still place decisions about healthcare for transgender people in the hands of administrators rather than doctors, in defiance of court rulings and accepted medical standards.

Fortunately, advocates across the country are working to change this. New national standards intended to prevent abuse behind bars, published by the U.S. Justice Department in 2012, include key protections for LGBT prisoners, including directing that trans people be considered for housing based on their gender identity. Jails from Maine to Texas are beginning to implement these standards, and courts are increasingly ruling in favor of LGBT prisoners’ rights to safety and adequate care.

At the same time, LGBT activists are joining with racial justice, faith, disability, and other groups to demand alternatives to America’s addiction to incarceration. Efforts are also underway at the local and national levels to end police profiling based on race, religion, and LGBT status. Driven as much by fiscal pressure as moral clarity, politicians of both parties are pressing for reforms to sentencing, drug laws, probation, parole, and other laws at the state and federal levels, leading prison populations to edge downward since 2010 for the first time in four decades.

But there is clearly much, much farther to go.

Combating mass incarceration and abuse behind bars belongs much higher on the LGBT movement agenda. We can only move forward as a movement if more people prioritize this work, and we hope NCTE’s new guide can help energize and inform that work. The trans and LGBT movements are filled with amazing people and we know that working together with our allies, we can make the world a more just place.

C2EA Cleveland, in conjunction with The Proving Ground group, hosted their first roundtable discussion focused on a new initiative of C2EA – “End Aids by 2025.” Over dinner sponsored by BMS, a very diverse group of individuals – both negative and positive – engaged in a very intense conversation about the real issues that are keeping us from effectively combating new infections. At the table various demographics including transgenders, high school students, men who have sex with men, heterosexual men and women, and the religious community were all well represented.

As we began to talk about viral suppression and community viral load, I invited a gentlemen to the table who found himself constantly in and out of treatment due to substance abuse issues. He spoke openly and candidly about the issue that he has been faced with – barriers to medical adherence.

Another area that was heavily discussed was the transgender community. The transgender woman at the table has been a long-standing leader of the LGBTQ community for years and is HIV-negative. She spoke on many issues that are prevalent in the transgender community. One issue that sparked conversation is the issue of positive transgenders’ battle in choosing hormonal adherence over antiretroviral treatment.

Due to the success of this group it will be held every three months with a community wrap-up forum with the health department, AIDS service organizations, and other stakeholders to discuss how we can devise a more effective strategy to end AIDS.

I started the group “Proving Ground” as a way to have a real conversation with a diverse group of individuals about what the real issues are in the fight against AIDS. When I learned that C2EA was involved in this new initiative I knew that this was the perfect marriage. At each group we are not just talking, we are also gathering data so that when we meet with the city we will have a complete spreadsheet of issues and statistics. Every three months the dynamic at table will be different. For instance, the table next time will be all transgenders, the group after that all high schools students, etc. It is through these candid and real conversations we develop a more practical and effective strategy to end AIDS.

Your action is important: Members of Congress have drafted three letters currently circulating in the House of Representatives to request increased domestic HIV funding. Ask your Representative today to sign these letters before their approaching deadlines. We have your Congressmember’s telephone number ready to go – just click on the link below to learn how to take action.

The letters are being circulated in the House of Representatives calling for support of Fiscal Year (FY) 2015 federal funding for domestic HIV programs. Your Member of Congress needs to know that this funding is essential to the prevention, treatment, and care of HIV by addressing all issues that affect the epidemic.

These three “Dear Colleague” letters have been sent to each Member of Congress. Ask your Congressmember to sign the letters by their respective deadlines, listed above. Please have them contact the Congressional staff listed as the contact for each letter to add their name. These letters are signed only by Members of Congress.

The deadlines for these letters are approaching fast. Your immediate action is needed.

With an Executive Budget proposed by President Obama earlier this month, our attention has now turned to the House and Senate budgets for the 2015 fiscal year. Several “Dear Colleague” letters are now in circulation to support funding increases for key programs that impact the supportive housing world. We urge you to call your elected officials and call on them to sign on in support. For a rundown of key programs within the US Department Housing and Urban Development (HUD), see below.

How? Call the Capitol Switchboard at 202-225-3121 and ask for your Senator or Representative’s office!

McKinney-Vento Homeless Assistance
Rep. Gwen Moore is leading a sign-on letter for her colleagues in the House of Representatives in support of the President’s request of $2.405 billion in funding for HUD’s McKinney-Vento Homeless Assistance Grants in FY 2015. The deadline for representatives to join the letter is April 4. Members of the House can sign on to the letter by contacting Sean Gard of Rep. Moore’s office.

Similarly, Senator Jack Reed is circulating a sign-on letter in the Senate in support of funding for McKinney programs in FY 2015. The deadline for senators to sign on to the letter is April 1. Members of the Senate can join by contacting James Ahn in Senator Reed’s office.

Housing Choice Vouchers
New York Rep. Jerold Nadler’s Dear Colleague letter supports increased funding for Housing Choice Vouchers. In order to restore all lost Housing Choice Vouchers (HCV) due to sequestration, HUD needs an additional $320 million above the President’s budget request. The deadline for the letter is March 31. The contact in Rep. Nadler’s office is Melissa Connolly.

HOME Program
Rep. Marcia Fudge and Sen. Patrick Leahy are both circulating Dear Colleague letters on the HOME Program. The House letter requests a return to fiscal year 2011 levels of $1.6 billion for the HOME Program. The Senate letter requests a funding increase to $1.2 billion for fiscal year 2015. Both letters represent an increase over the President’s request of $950 million. The deadline for the House letter is March 26, and the contact in Rep. Fudge’s office is Jacob Gelman. The deadline for the Senate letter is March 28, and the contact is Lauren Bracket.

Veterans Affairs Supportive Housing (HUD-VASH)
New York Rep. Michael Grimm is leading a bipartisan effort with Rep. Al Green and Rep. Mike Michaud to support the President’s request of $75 million for 10,000 new HUD-VASH vouchers. The deadline to sign on is March 27. The contact at Rep. Green’s office is Gregg Orton.

Time is of the essence for these programs. Please call your representative and senators TODAY and urge them to sign on to these four important letters! Call the Capitol Switchboard at 202-225-3121 and ask for your Senator or Representative’s office!

The state has negotiated a deal with a major pharmaceutical company to cut the price of anti-retroviral drugs to treat HIV, state Health Commissioner Nirav R. Shah said Wednesday.

The move is part of an evolving state plan to reduce the number of New Yorkers infected with the virus that causes AIDS.

On Wednesday, Shah told cheering AIDS activists at the Legislative Office Building that the state aims to cut the number of newly diagnosed cases from about 3,400 in 2012 to under 730 by 2020.

About 130,000 New Yorkers currently live with HIV or AIDS.

Activists said the deal with California-based drugmaker Gilead Sciences Inc., which Shah estimated has a 40 percent market share in anti-retrovirals for HIV, should push other manufacturers to follow suit.

State health officials are “doing a very bold move of pressuring drug companies to lower the price of AIDS drugs,” said Sean Barry, executive director of New York City-based Voices of Community Activists and Leaders (VOCAL-NY).

The state is a high-volume purchaser of the drugs. More than 60,000 New Yorkers with HIV are covered by the government-sponsored Medicaid program. More may seek HIV testing or treatment with the expansion of Medicaid through the Affordable Care Act.

Controlling the illness and its spread is cost-effective, the health commissioner said.

“Every new case of HIV results in $379,000 in additional lifetime costs” to treat the patient, Shah said.

Other goals, he said, include reducing by half the number of New Yorkers progressing from HIV to AIDS and addressing social conditions that contribute to the prevalence of the disease among low-income people.

Key to reaching the objectives is increasing the number of New Yorkers with HIV who have the virus under control, said Dan Tietz, executive director of the New York City-based AIDS Community Research Initiative of America. This means they are receiving treatment, retain an undetectable level of the virus and have a minimal chance of infecting others. Tietz called for doubling the percentage of patients who fall into this category, now at 40 percent to 50 percent of infected people.

Shah touted the progress made fighting AIDS in New York, which was “the leading incubator of the disease” 30 years ago, he said. Prevention and treatment efforts have led to a 40 percent reduction of new HIV cases and AIDS-related deaths in the last decade. Out of 240,000 births in New York last year, just two babies were born with HIV transmitted from their mothers, he said.

The state’s plan also would simplify the consent needed for HIV testing — from written to verbal — and the sharing of medical data, Shah said.

The health commissioner’s remarks were met with deafening applause and exuberance — a far cry from the antagonism in past interactions between state officials and AIDS activists.

“That Dr. Shah can stand there and get this applause is another step forward — it’s huge,” Barry said.

Gov. Andrew Cuomo’s proposed state budget calls for $9 million to support a rent cap for disabled New York City residents with AIDS.

With the Gilead deal sealed, the governor may disclose further details of the state’s plan to reduce HIV infection to point where the virus would no longer be deemed epidemic, Shah said.

“It’s going to happen,” Shah said. “It’s a matter of ‘when,’ not ‘if.’”

Addressing Violence Against Women and Children Is Critical to Achieving an AIDS-Free Generation and the Millennium Development Goals

During this week’s 58th session of the United Nations Commission on the Status of Women, the global community will come together to reflect on key achievements and challenges in advancing progress toward the Millennium Development Goals (MDGs) for women and girls. This provides an opportune moment to examine the impact of one such challenge: violence against women and girls.

Violence against women and girls has impeded progress on nearly every MDG. This includes efforts to reach the MDG 6 target of halting and beginning to reverse the spread of HIV/AIDS—an epidemic that still disproportionally affects women and girls in many countries. According to the World Health Organization (WHO), one in three women worldwide has experienced physical and/or sexual violence in her lifetime. Women who experience violence also often face serious health consequences, including higher rates of unintended pregnancies, mental health problems, and sexually transmitted infections (STIs), including HIV.

Significant evidence linking violence against women and HIV has emerged over the past decade. A recent analysis by the WHO shows that intimate partner violence increases women’s risk for HIV infection by more than 50 percent, and in some instances by up to four-fold. Violence also affects women’s willingness to seek HIV testing and counseling or to stay on lifelong anti-retroviral treatment. Studies in multiple countries have also found that adolescent girls who experience sexual violence are up to three times more likely to acquire HIV or other STIs. These are among the many reasons why, through a new consolidated Gender Strategy, the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) will require all its country programs to report the number, age, and sex of people that they support in accessing post-gender-based-violence care, as part of a comprehensive HIV/AIDS response.

We also recognize that every year up to one billion children face some form of violence. These experiences can impede their progress toward realizing healthy and productive futures—affecting everything from their ability to succeed at school to their vulnerability to infectious diseases, such as HIV. As girls enter adolescence, they are more vulnerable to the same types of violence experienced by women—namely sexual violence and intimate partner violence. Young and adolescent girls are also vulnerable to early or forced marriages and harmful practices such as female genital mutilation/cutting.

Early marriage is devastating to a girl’s health and education, and exposes her to greater risk of abuse and violence. Girls who marry young and bear children are five times more likely to die during pregnancy or childbirth than women over the age of 20. The UN Population Fund states that every year 2 million girls between the ages of 10 and 14 give birth, and over 90 percent of these take place within marriage or some other form of union. Further, women who experienced violence as children are more likely to be in violent relationships as adults. Boys who experience or witness violence as children are also more likely to perpetrate violence in adulthood.

Launched in 2009, Together for Girls (TfG) is an innovative public-private partnership that is supporting efforts to addresses violence against children, particularly girls, by gathering data on its magnitude, nature, and consequences, and using these data to help mobilize national governments to take greater action. TfG brings together private sector partners, United Nations agencies, and the U.S. Government—through PEPFAR and the U.S. Centers for Disease Control’s (CDC) Division of Violence Prevention, and in collaboration with the State Department’s Office of Global Women’s Issues.

Working with the CDC, TfG has provided national data on violence against children through the Violence Against Children Survey (VACS). For the first time, VACS have already been completed in four countries, and are at various stages of development and implementation in seven more, including in Haiti and Malawi. Results from completed VACS reveal that 26 to 38 percent of women and girls have experienced sexual violence before age 18, and well over half of them experienced more than one such incident. Moreover, 23 to 53 percent of women and girls reported that their first sexual intercourse before the age of 18 was unwanted. This is simply unacceptable.

Due in part to these findings, countries are stepping up their efforts to address violence against women and girls. Swaziland has launched a database to track cases of violence, has established courts that are friendly to women and girls, and is increasing post-rape care through one-stop centers. Governments in Tanzania, Kenya, and Zimbabwe are scaling up national violence prevention and action plans. In Nairobi, Child Protection Centres have been expanded to reach more than 2,200 children with protective services.

The U.S. government and its partners are deeply committed to helping address violence against women and girls, including by supporting countries that want to tackle these issues head-on. This is critical not only to ensure that all individuals can participate fully and safely in their families and communities, but also can access HIV-related and other essential health services. We are pleased to see the growing momentum around these issues, and hope that additional governments and partners will take similarly strong steps so that, ultimately, we can bring the global scourge of violence against women and girls to an end.

The PARTNER study doesn’t just tell us that HIV-positive gay guys on treatment are pretty safe. It tells us that they’re safer than a lot of ‘HIV negative’ guys.

The big news at last week’s HIV conference in Boston was a thing that didn’t happen. A trial, the PARTNER study, found that no one, gay or straight, who had HIV but was on successful treatment transmitted the virus to their partner over the two years the trial has so far lasted. And that’s in people largely not using condoms. As Tyler Curry writes in his blog, this is big news.

One of the researchers said that they’d have expected 86 transmissions between partners, or thereabouts, if none of the HIV positive people was on treatment. It was no big surprise that instead they saw none, since successful HIV treatment reduces the amount of HIV in your system ten-thousandfold or more.

To those less acquainted with the workings of HIV, and more surprised by the news, you’d think this would be cause for celebration. In the gay community, however, the news was received by many with disbelief (“This is bullshit science” said one) or downright fear.

Take someone Tyler Curry quotes. “HIV undetectable (people) will use it as excuse to bareback” [Yes, but terms solely of HIV risk, the PARTNER study is telling us it won’t matter if they bareback] “or skip their daily antiviral meds” [Why in God’s name would they want to do that?] “Then become re-infected creating a super bug of HIV that current meds can’t treat” [Run for the hills].

A couple of ‘Yes, But’s. Firstly, the reason the trial does need to be continued in gay men is because so far we only have relatively few people in it.

A proper scientist, unlike me, would say something like this: “Seeing zero transmissions allows us to estimate that the true risk of transmission lies somewhere between zero and 1% a year” – not that comforting if taken over ten years.

But that caveat is about the fuzziness of the picture we have, and not about the thing it shows, namely nothing. Researchers expect that with more people and time, and barring nasty surprises, the maximum estimate of risk will probably edge ever closer to zero.

A bigger ‘Yes, But’ is this: the PARTNER scientists are keeping another figure close to their chest: the number of HIV infections the negative guys actually got. They hinted there were quite a few, and probably a lot of other STIs too. A smidgeon of HIV may come from the 5% or so of positive partners who were unlucky enough to have treatment failure. But the vast majority will come from sex with guys outside the main relationship. Mainly, probably, guys who thought they were HIV negative.

And here we get to the heart of the meaning of the PARTNER study. It confirms that we gay men have to change our ideas about infectiousness and HIV radically if we are to stand a chance of reducing HIV infection in our community.

Valerie Delpech is one of British science’s hidden treasures (except she’s Australian), an epidemiologist who sifts through every shred of evidence from her lab at Public Health England (do epidemiologists have labs? I’m not sure).

Last September she showed a presentation at a conference – it’s here. Now, readers, turn to slide 14. What this shows is that of HIV-positive guys you might encounter while dating, two-thirds will know they’re positive but won’t be infectious: but of the infectious ones, two thirds will think they’re HIV-negative.

I’ll repeat that. If you’re a gay Brit, two-thirds of the guys who could give you HIV think they don’t have it.

Given that in London one in seven gay men has HIV, this means that [taps calculator]:

~ one in every 32 men you may meet dating thinks he’s HIV negative and can’t give you HIV when, in fact, he can;
~ one in every 44 men you may meet dating knows he has HIV, and is infectious. The other poz guys aren’t.
Ergo: Guys who tell you they’re positive are safer than guys who tell you they’re negative.QED.

So, with all this new-found knowledge, the way to avoid HIV is simple, eh?

[At this point someone usually says “Yes, use a condom every time,” so I will interrupt this broadcast with this brief message. Ahem:

- CONDOMDISCLAIMER: Condoms are a jolly good idea. They protect against lot of other nasty diseases as well as HIV. If I had casual sex I’d use a condom. They should be widely available and cheap. Nothing in this article should be construed as hostility to condoms or undermining gay men’s motivation to use them. If you use condoms 100% of the time, great. This isn’t about you or for you. It’s for the 40% or so of gay guys who have sex with new partners without condoms. Thank you.

Now back to our broadcast]:

So, with all this new-found knowledge, the way to avoid HIV is simple, eh? If you’re an HIV negative guy and you don’t use condoms every time with a new date, then just date HIV-positive guys on treatment. They’re very unlikely to infect you.

Hahahahahah. Excuse me while I pick myself off the floor.

Because we all know how most HIV-negative guys who don’t use condoms with new partners avoid HIV, don’t we? They ask if you’re ‘clean’ or ‘disease free’ and then won’t touch you with sterilised tweezers if you fess up to being poz.

Don’t take my word for it. Another study at last week’s HIV conference looked at all the gay guys attending the Seattle HIV clinic who were at risk of HIV (meaning that they had buttsex but weren’t monogamous and didn’t always use condoms). Most of these tried to take steps avoid HIV in other ways.

By far the most popular way – a strategy adopted by 42% of all the HIV negative men in the survey – was to never, ever have sex with a poz guy, period.

I’m not saying that HIV-negative guys aren’t allowed to think twice and ask questions if someone discloses HIV. No-one’s entitled to sex, least of all this greying 57-year-old here.

But I do wish the message would get across that if I say I’m vanishingly unlikely to infect you because I’m on the pills, I’m telling you the simple truth, not using my evil seductive wiles to get you into the poz club.

A lot of poz guys do lie about their status – because they’re afraid of rejection. The saddest study at the conference was a German one. It asked poz guys if they believed their undetectable viral load made them non-infectious and if so, whether they based condom decisions on it.

Only 10% admitted to doing this but that 10% were far more likely to have condomless sex (natch – they don’t think they’re infectious). But they were also far less likely to disclose they had HIV, far less likely to raise the subject at all, far more likely to have anonymous sex.

‘Undetectable=uninfectious’ wasn’t, for them, a belief that spurred discussion about HIV status and viral load. It was an excuse to avoid any discussion at all, and the rejection that comes with it.

When the first study came out showing the power of HIV treatment to reduce infectiousness, the hope was expressed that it might reduce the stigma against people with HIV. It hasn’t happened. It’s just so much easier to avoid visible people than an invisible virus.

The real danger of the Reject All Poz Guys strategy is not so much the ‘serodivide’ it perpetuates in the gay community – though that’s damaging enough – but more that it reinforces the idea ‘If he says he’s negative he’s safe’.

In an HIV epidemic where half of those who pass on HIV have themselves had it for less than six months, basing your dating decisions on someone assuring you they don’t have HIV is downright daft. The price of that strategy may be what we see: a undiminished rate of infection in gay men.

Urge Your House Representative To Sign Important Dear Colleague Letter

Representatives Mike Honda, Hank Johnson, and Judy Chu are asking all House Representatives to sign an important letter supporting increased funding for viral hepatitis programs in the Fiscal Year 2015 appropriations bill (see text of letter below).

Please take a few minutes before March 25th to call your House Representative’s office in Washington, DC and ask/him to sign this letter.

You can reach your Representative through the Congressional Switchboard at (202) 224-3121. Ask to be connected to your Representative. Once you are connected to the office, ask to speak to the staff person who handles health care issues. Whether you speak to that person live or leave a voicemail, tell them (1) your name, (2) where you live and that you are a constituent, (3) that you would like the Representative to sign the “Dear Colleague” letter from Representatives Honda, Johnson, and Chu supporting increased funding for viral hepatitis and (4) a brief message why this issue is important to you. Tell them they can sign the letter by contacting Kelly Honda in Representative Honda’s office, Scott Goldstein in Representative Johnson’s office, or Linda Shim in Representative Chu’s office. The deadline for Representatives to sign is March 25th.

The Honorable Jack Kingston
Chairman
Subcommittee on Labor, Health and Human Services
United States House
Washington, D.C., 20515

The Honorable Rosa DeLauro
Ranking Member
Subcommittee on Labor, Health and Human Services
United States House
Washington, D.C., 20515

Dear Chairman Kingston and Ranking Member DeLauro:

As you begin deliberations on the Fiscal Year 2015 Labor, Health and Human Services, Education, and Related Agencies Appropriations bill, we would like to respectfully request that you allocate $47.8 million for the Division of Viral Hepatitis (DVH) at the Centers for Disease Control and Prevention (CDC), an increase of $16.4 million over the FY2014 level.

The CDC’s 2010 professional judgment (PJ) budget recommended $90.8 million each year from FY2011-FY2013, $170.3 million annually from FY2014-FY2017, and $306.3 million annually from FY2018-FY2020 for DVH in order to comprehensively address the viral hepatitis epidemic. While past increases have been helpful, these have only been small steps toward building a more comprehensive response to viral hepatitis. Our recommendation of $47.8 million is in line with the needs determined by the PJ and the goals of the Viral Hepatitis Action Plan, but pales in comparison to the CDC’s PJ.

The need to enhance and expand these prevention efforts is growing more urgent. Viral hepatitis is the leading cause of liver cancer – one of the most lethal, expensive and fastest growing cancers in America. More than 5.3 million people in the U.S. are living with hepatitis B (HBV) and/or hepatitis C (HCV) and 65-75% of them are undiagnosed. Without an adequate, comprehensive surveillance system, these estimates are only the tip of the iceberg. Viral hepatitis kills 15,000 people each year and is the leading non-AIDS cause of death in people living with HIV – nearly 25 percent of HIV-positive persons are also infected with HCV and nearly 10 percent with HBV.

The epidemic is particularly alarming because of the rising rates of new infections and high rates of chronic infection among disproportionately impacted racial and ethnic populations, and presents a dramatic public health inequity. For example, HCV is twice as prevalent among African Americans as among Caucasians. Asian Americans comprise more than half of the known hepatitis B population in the United States and, consequently, maintain the highest rate of liver cancer among all ethnic groups. Additionally, African American and Latino patients are less likely to be tested for HCV in the presence of a known risk factor, less likely to be referred to treatment for subspecialty care and treatment, and less likely to receive antiviral treatment. Recent alarming epidemiologic reports indicate a rise in HCV infection among young people throughout the country. Some jurisdictions have noted that the number of people ages 15 to 29 being diagnosed with HCV infection now exceeds the number of people diagnosed in all other age groups combined.

Further, the baby boomer population (those born 1945-1965) currently accounts for two out of every three cases of chronic HCV. As these Americans continue to age, they are likely to develop complications from HCV and require costly medical interventions that can be avoided if they are tested earlier and provided with treatment options. It is estimated that this epidemic will increase costs to private insurers and public systems of health such as Medicare and Medicaid from $30 billion in 2009 to over $85 billion in 2024, and also account for additional billions lost due to decreased productivity from the millions of workers suffering from chronic HBV and HCV.Over the last two years, CDC and the U.S. Preventive Services Task Force (USPSTF) have begun to align their recommendations for hepatitis screening, recommending one-time testing of baby boomers and screening vulnerable groups for HCV.

We appreciate the Committee’s support for viral hepatitis prevention, in particular the increased support to prioritize the identification of HBV and HCV-positive individuals who are unaware of their status. We strongly encourage you to sustain your commitment this year. We have the tools to prevent the major causes of viral hepatitis and liver cancer – a hepatitis B vaccine and effective treatments that reduce disease progression, new diagnostics for HCV and treatments that increase cure rates over 90%, and even more medical advances in the research pipeline. Making this relatively modest investment in the prevention and detection of viral hepatitis represents a key component in addressing a vital public health inequity and will get more Americans into care, strengthen our public health infrastructure and combat the devastating and expensive complications caused by viral hepatitis.

GRINNELL, IA, March 14, 2014 — Registration is open for the first-ever national HIV is Not a Crime conference convened to unite and train advocates living with HIV and allies from across the country in the effort to end the criminalization of people with HIV. The gathering will be held from June 2nd to 5th, 2014, at Grinnell College in Grinnell, Iowa.

“We expect to a see diverse range of attendees who are working or volunteering for grassroots community groups or organizations across the country,” said Robert Suttle, one of the conference organizers and a person living with HIV. “We’re asking community organizations to assist us with raising funds to provide need-based scholarships, because every person that attends will help strengthen our movement to educate the community and advance advocacy for criminalization reform,” Suttle added.

The conference will empower attendees with three days of workshops and practical trainings on state advocacy, grassroots organizing, activism, and familiarity with the legal, medical, media, and public health issues related to HIV criminalization. As a result of the HIV Is Not A Crime conference, individual and organizational participants will be better equipped to initiate or advance advocacy in their home states addressing HIV-related criminalization, stigma and discrimination. The conference will help to rebuild and reenergize state-based HIV advocacy efforts.

Registration and scholarship information can be found on the conference website: www.HIVIsNotACrime.com. Scholarship applications must be submitted by April 7th.

HIV criminalization refers to the wrongful use of one’s HIV positive status in criminal prosecutions, which has led to people with HIV being charged under HIV-specific criminal statutes, or under general criminal statutes, including for behaviors that pose no or little risk of HIV transmission. Sentencing in these cases has sometimes involved decades in prison and/or required sex offender registration, including in circumstances when there was no risk of HIV transmission.

These laws, policies and practices contribute to the HIV epidemic by driving people away from public health and treatment programs and by discouraging at-risk individuals from getting tested.

To get involved or request information on the conference program, registration, and scholarship details, contact conference@seroproject.com.

Medicaid is the nation’s largest source of health coverage, providing health insurance for nearly 54 million Americans. While the program is framed as one designed to improve access to healthcare and even improve health, its impact on poverty reduction has not been as well researched. A recent study, however, reveals the significant poverty-reducing effects of Medicaid and finds that in a comparison against other government programs, Medicaid is the third largest anti-poverty program in the United States, behind only the Earned Income Tax Credit and the Supplemental Nutrition Assistance Program. These poverty-reducing effects have broad implications for families and individuals in metropolitan areas, where Census figures show that people had a higher likelihood of struggling financially; here in the Chicago metro area, 14.5 percent of residents were considered in poverty in 2012.

The data show that Medicaid reduces medical out-of-pocket spending from $871 to $376 on average per beneficiary.
In the article “The Poverty-Reducing Effect of Medicaid” economists Benjamin Sommers and Donald Oellerich use a counterfactual model to assess the impact of eliminating Medicaid on poverty. The data show that Medicaid reduces medical out-of-pocket spending from $871 to $376 on average per beneficiary. The authors attribute this reduction in out-of-pocket spending to generous benefit plans, the absence of premiums, and lower cost sharing requirements in comparison to private insurance. The data shows that the reduction in out-of-pocket spending decreases poverty rates by 1.0 percent, 2.2 percent, and 0.7 percent among children, disabled adults, and the elderly, respectively. Medicaid also kept an additional 500,000 institutionalized persons out of poverty in 2010.

In order to approximate the impact of Medicaid on finances, Sommers and Oellerich model overall out-of-pocket spending using two analytical approaches. The preferred stochastic model, which relies on random variation, uses propensity score matching to account for both the in-kind transfer and risk protection effects of Medicaid. The stochastic technique attempts to estimate the impact of Medicaid by controlling for confounding variables in order to render groups with and without Medicaid coverage more comparable. Random values of out-of-pocket spending drawn from individuals without Medicaid are then assigned to each person with Medicaid coverage. Sommers and Oellerich derive the data used in their analysis from the 2011 Current Population Survey (CPS).

Using the preferred model to estimate the net change in percentage and number of people who would be living in poverty and extreme poverty in the absence of Medicaid reveals that in 2010 the program kept 2.1 million Americans out of poverty and 1.4 million out of extreme poverty. The absence of Medicaid is also associated with a $495 increase in out-of-pocket spending from $376 to $871 on average, and a six percent decrease in family income with a disproportionate impact on disabled adults, children, the elderly, and racial and ethnic minorities. The number of people reporting Medicaid coverage in the CPS is lower than the number of people in the state enrollment files; it appears that the actual poverty-reducing effect of Medicaid may be even greater than the numbers show.

Sommers and Oellerich also performed subgroup analyses, calculating changes in poverty rates and out-of-pocket spending associated with Medicaid across race/ethnicity, gender, and Census region. The results reveal that the poverty-reducing effects of Medicaid are greatest for minorities (“blacks and Hispanics”) and women, confirming the findings that these two populations make up a disproportionate share of Medicaid enrollment. The analysis also shows some differences across Census regions, with the greatest share of poverty reduction in the Northeast and the smallest in the Midwest.

As previously noted, the implications of the poverty-reducing effects of Medicaid are significant for major metropolitan areas that are home to a large percentage of low-income families and individuals. Potential Medicaid expansion under the Affordable Care Act (ACA) would lead to a decline in out-of-pocket spending among the newly enrolled, as Medicaid expansion is expected to increase the number of poor and near poor enrolled in the program by 10-20 million. In contrast, states that have opted out of Medicaid expansion through the ACA, where eight million impoverished and uninsured Americans are therefore ineligible for help, are unlikely to see a reduction in poverty.

Further efforts to reduce benefits or increase cost sharing, as is the case in states such as Illinois, which reduced the number of prescriptions covered for enrollees to four per month and imposed a co-pay for prescriptions for non-pregnant adults in 2012, would increase the financial burden on low-income populations and may have a substantial impact on Medicaid enrollment. This, in turn, could have negative repercussions on poverty rates throughout the region. With these recent policy decisions in mind, the findings of Sommers and Oellerich reveal the importance of Medicaid as a tool for poverty reduction and provide important evidence for policy makers at both the state and federal level on the need for sustained dialogue around Medicaid expansion.

New treatments for hepatitis C that cost at least $66,000 to $84,000 may work better than older drugs, but their cost undermines their value to the health system, a panel of experts said during a daylong forum in San Francisco.

“The price makes it very hard for the health care system,” said Steve Pearson, who oversaw the meeting Monday for the California Technology Assessment Forum, a group affiliated with health insurers that holds public meetings to weigh evidence on new treatments.

The 15-member panel, which included representatives of hospitals, insurers and patient advocates, did not make specific recommendations on how to prioritize use of the drugs, which hit the market late last year. Sovaldi, made by Gilead Sciences, costs $1,000 a pill. Slightly less expensive is Olysio, made by Johnson & Johnson.

Panel members and outside experts nearly all agreed that for cost and medical reasons, not every patient with hepatitis C needs to be immediately treated with the new drugs. An estimated 3 million Americans carry the viral infection.

“I can’t imagine how that would be feasible without bankrupting our system,” said Rena K. Fox, a professor of medicine at the University of California, San Francisco, invited by the forum to speak as an outside expert.

“What I really wish for is that we could push back on the price, rather than make patients wait. But since we don’t have the ability to change the price, we have to decide which patients are the most urgent.”

Drugmakers defend the prices citing research costs and saying the pills are curative for many patients, thus avoiding costly complications like transplants.

Both outside experts and some panel members said that waiting might be a better answer for some patients – particularly those with little or no liver damage – because additional treatments are expected to hit the market within a year. Patients with more advanced liver damage from the virus would be treated first.

Healthier people had also waited to use the older drugs, hoping for something to come along that would have fewer side effects.

Hepatitis C is a chronic infection that can take years or decades to progress. Over time, it can lead to cancer, cirrhosis or the need for a liver transplant. At least 70 percent of those infected have no symptoms. It is spread mainly by intravenous drug use, but many people were unknowingly infected by poorly sterilized medical equipment and blood transfusions before widespread screening of the blood supply began in 1992. Some may also have been infected through tattoos and piercings with contaminated needles.

But patients may not want to wait, said Ryan Clary, executive director of the National Viral Hepatitis Roundtable, a consumer group partially funded by the drug industry. Television advertisements sponsored by Gilead are encouraging people to be screened for hepatitis and to talk with their doctors about new treatment options.

“If I was hepatitis C-positive and someone said there’s this great treatment, but can you hold off because you’re healthy and it might bankrupt the system … patients don’t think like that,” said Clary, another outside expert asked to speak at the forum.

Private insurers, as well as those serving Medicaid patients, are wrestling with how to cover the new drugs. Many say they will require prior authorization and may limit coverage to the sickest patients. Some Medicaid insurers have asked states for additional help in paying for the drugs.

Recommendations that stemmed from Monday’s meeting – including the panel’s votes on a host of questions about the effectiveness of the new treatments compared with older regimens – will be released within a month.

Nine human-rights and LGBT advocates were arrested today after blocking the entrance to the Consulate General of Nigeria in Midtown Manhattan. This act of civil disobedience was to protest the draconian anti-LGBT law signed by Nigerian President Goodluck Jonathan on January 14, a law that makes gay marriage and same-sex relationships crimes punishable by up to 14 years in prison. The protestors’ demand was simple: to rescind the law and let LGBT Nigerians live their lives free of discrimination and violence.

The action was part of a larger rally attended by nearly 400 protestors, including many Housing Works staff, clients, and volunteeers. The demonstration, organized by the Nigerian Solidarity Alliance, brought together nearly a dozen prominent human rights, immigrant, and LGBT advocacy organizations to co-sponsor the event, including amfAR, Housing Works, ACT UP, GMHC, and Immigration Equality.

Among the rally speakers was Nigerian activist and Housing Works social worker Michael Ighodaro, who sought asylum in the U.S. in 2012 after a violent attack and death threats at home. Ighodaro expressed his hope that the outcry of visible and widespread public support will ensure things improve and that the hatred and violence he and other Nigerians face abroad doesn’t last. “I am Nigerian by birth, just as I am gay by birth,” said Ighodaro. “I was born gay. And I am now American, grateful to find safety and support here but far from the home where I belong, because my own government says who I am and who I love is a crime.”

In his speech at the demonstration, Housing Works President & CEO Charles King described the devastating, domino effect of these anti-LGBT laws and the culture of intolerance, homophobia, and violence being fostered by them:

“We have gathered today to demonstrate our solidarity with the lesbian, gay, bisexual, and transgender community of Nigeria and with their families and friends. We stand today not only in solidarity with this community, but also with the same communities in Uganda, in Cameroon, in Jamaica, with the young black gay man in East New York, with the young transgender Latina woman in the South Bronx, indeed, with all those around the globe, wherever they may dwell, who live in fear, who are forced from their homes, who suffer violence and indignities upon their person because of who they are or whom they love.”

King went on to note that the resulting shutdown of lifesaving HIV services at LGBT organizations in Nigeria, where an estimated 3.4 million people live with HIV, is also of grave concern. “This law has driven people who are most at risk of HIV further underground,” King asserted. “People who are living underground will not come forward to risk being tested. People who are infected with HIV will not risk coming forward for treatment. By driving people underground, we are driving the epidemic underground, where it will continue to flourish and spread…We have within our grasp the science and the technology to end AIDS as an epidemic around the globe. Sadly, we do not have the science nor the technology to end hate…That is why, at its core, the fight against AIDS is a fight for human rights and human dignity.”

For Immediate Release: March 7, 2014

Nine human-rights and LGBT advocates were arrested today after blocking the entrance to the Consulate General of Nigeria in Midtown Manhattan. This act of civil disobedience was to protest the draconian anti-LGBT law signed by Nigerian President Goodluck Jonathan on January 14, a law that makes gay marriage and same-sex relationships crimes punishable by up to 14 years in prison. The protestors’ demand was simple: to rescind the law and let LGBT Nigerians live their lives free of discrimination and violence.

The action was part of a larger rally attended by nearly 400 protestors, including many Housing Works staff, clients, and volunteers. The demonstration, organized by the Nigerian Solidarity Alliance, brought together nearly a dozen prominent human rights, immigrant, and LGBT advocacy organizations to co-sponsor the event, including amfAR, Housing Works, ACT UP, GMHC, and Immigration Equality.

Among the rally speakers was Nigerian activist and Housing Works social worker Michael Ighodaro, who sought asylum in the U.S. in 2012 after a violent attack and death threats at home. Ighodaro expressed his hope that the outcry of visible and widespread public support will ensure things improve and that the hatred and violence he and other Nigerians face abroad doesn’t last. “I am Nigerian by birth, just as I am gay by birth,” said Ighodaro. “I was born gay. And I am now American, grateful to find safety and support here but far from the home where I belong, because my own government says who I am and who I love is a crime.”

In his speech at the demonstration, Housing Works President & CEO Charles King described the devastating, domino effect of these anti-LGBT laws and the culture of intolerance, homophobia, and violence being fostered by them:

“We have gathered today to demonstrate our solidarity with the lesbian, gay, bisexual, and transgender community of Nigeria and with their families and friends. We stand today not only in solidarity with this community, but also with the same communities in Uganda, in Cameroon, in Jamaica, with the young black gay man in East New York, with the young transgender Latina woman in the South Bronx, indeed, with all those around the globe, wherever they may dwell, who live in fear, who are forced from their homes, who suffer violence and indignities upon their person because of who they are or whom they love.”

King went on to note that the resulting shutdown of lifesaving HIV services at LGBT organizations in Nigeria, where an estimated 3.4 million people live with HIV, is also of grave concern. “This law has driven people who are most at risk of HIV further underground,” King asserted. “People who are living underground will not come forward to risk being tested. People who are infected with HIV will not risk coming forward for treatment. When every sexual encounter becomes a furtive gesture that risks one’s life, safer sex becomes an oxymoron. By driving people underground, we are driving the epidemic underground, where it will continue to flourish and spread…We have within our grasp the science and the technology to end AIDS as an epidemic around the globe. Sadly, we do not have the science nor the technology to end hate…That is why, at its core, the fight against AIDS is a fight for human rights and human dignity.”

The Same Sex Marriage Prohibition Act, a draconian anti-LGBT law, was signed by Nigerian President Goodluck Jonathan on January 14. Here’s what that legislation means in practice:

• If two men walk into a bar in Nigeria while holding hands, they could both go to prison for 10 years.

• If they join any kind of LGBT club or organization, including those offering HIV health services, the penalty is another 10 years in prison.

• If two Nigerians, gay or not, attend a same-sex wedding in Nigeria, they too face 10 years in prison.

• And if two Nigerians enter into a same-sex marriage or civil union, the only gift they’ll get to celebrate their love and commitment is 14 years in prison.

• Because any Nigerian joining or entering any organization with an LGBT affiliation can be arrested, even if they’re not gay and are there to receive medical services to treat HIV, the law has the potential to return Nigeria and its estimated 3.4 million people living with HIV—the second largest HIV population in the world—to the Dark Ages of the AIDS crisis.

The culture of intolerance, homophobia, and violence fostered, promoted, and sanctioned by this law has given rise to a rash of arrests, imprisonments, mob beatings, public executions, and extortions, all on the basis of sexual orientation and gender identity, whether real or perceived. Commenting on the new law and the increased violence in a March 5 Al Jazeera article, Nigerian LGBT activist and Housing Works social worker Michael Ighodaro observed: *“People who are leaving [Nigeria], it’s increasing on a daily basis. You don’t want to stay back in a country where right now there’s a law that can send you to jail for 14 years or you can get beaten to death or you can’t get access to health care services if you’re gay. You don’t want to live there.”*

Ighodaro knows the hostile, violent, anti-LGBT climate in Nigeria first-hand. Ighodaro left his homeland in late 2012 following a homophobic attack and subsequent death threats and found sanctuary, health care, and legal support in the U.S. through Housing Works’ asylum program.

Threats by Western governments to cut aid unless such laws are rescinded may prove effective in aid-dependent African nations like Uganda, where a similar law was passed last month, but in Nigeria, where the budget is supported by the oil industry to the tune of an output of 2 million barrels a day, these tactics will likely have little to no leverage.

We here at Housing Works know that these atrocious laws cannot stand. That’s why we are standing in solidarity with LGBT Nigeria as part of a Global Day of Action this Friday, March 7. Along with organizational allies, including amfAR, IGLHRC, GMHC, HRC, ACT UP, All Out, Immigration Equality, Queer Nation, and the Kato Foundation, Housing Works is co-sponsoring a demonstration in front of the Consulate General of Nigeria on 2nd Avenue (between 44th and 45th Streets) in Manhattan.

Simultaneous demonstrations will also be taking place on March 7 in other cities across the globe, including Washington, DC, London, Edinburgh, Frankfurt, Amsterdam, Johannesburg, and Cape Town.

Please join us for the NYC demonstration to demand that Ambassador U. Joy Ogwu, Nigerian Ambassador to the U.N., and Ambassador Habib Baba Habu, Consul General at the NYC Nigerian Consulate, send a clear message to President Goodluck to rescind this horrifying law.

House Budget Committee Chairman Paul Ryan (R-WI) released a 204-page report on Monday analyzing the effectiveness of the nation’s anti-poverty programs 50 years after President Lyndon Johnson declared a national War on Poverty.

The assessment, which is designed to kick off his campaign to revamp federal welfare programs, broadly characterizes federal aid as counterproductive and ineffective. Ryan argues that federal programs have contributed to the nation’s high poverty rate and “created what’s known as the poverty trap.” The report argues, “Federal programs are not only failing to address the problem. They are also in some significant respects making it worse.”

But a closer look at the analysis undermines the old Ronald Reagan adage, “The nine most terrifying words in the English language are: ‘I’m from the government and I’m here to help.’” As Ryan’s own analysis points out, numerous progressive-minded spending programs have helped millions of Americans and significantly reduced the nation’s poverty rate. Below are 16 examples from Ryan’s own report of how the government can help lower-income Americans make ends meet:

Veterans Health Administration is the largest single-payer health care system in the United States. The report finds that the program is “effective in providing access to inexpensive health care for low-income veterans. ”

The Child Tax Credit provides assistance to families with children. “According to the Center on Budget and Policy Priorities, the CTC protected about 2.9 million people from falling into poverty, including about 1.5 million children,” the report says.

The Earned Income Tax Credit provides cash assistance to low-income working families. Accord to Ryan, the “consensus among studies on the EITC is that it is an effective tool for encouraging and rewarding work among lower-income individuals, particularly single mothers.”

Rural Housing Assistance Grants fund the repair and improvement of rural housing units. The report finds that the grants “allow very low-income elderly homeowners on a fixed budget to remain at home and independent.”

Title X Family Planning “provides grants to states for family planning and related preventive health services, excluding abortion services.” The report found that the program is “moderately effective.” According to a 2005 OMB assessment, “women who utilize Title X (Family Planning program) services as their primary source of health care have significantly greater odds of receiving contraceptive services and/or care for sexually transmitted diseases (STDs) than women who utilize private physicians or HMOs.”

Ryan White HIV/AIDS Program provides funding to states in support of health care costs associated with HIV/AIDS treatments for individuals and families. The initiative “has been shown to fill gaps in Medicaid’s HIV/AIDS services and delivery programs,” the report found.

Housing Opportunities For Persons With AIDS provides housing assistance and supportive services for low-income people living with HIV/AIDS. The program was found to be “effective” in “assisting a vulnerable population to achieve beneficial outcome.”

Federal Health Centers provide grants to outpatient primary-care facilities. The report found “fewer racial and ethnic disparities at community health centers” and concluded that they “perform better than private-practice primary case in some cases.” What’s more, medical expenses for health center patients were found to be lower compared to patients who receive care elsewhere.

Homeless Assistance Grants provide rehousing and supportive housing to the homeless. The program has been shown to “decrease homeless and reduce costs related to health care and institutionalization.”

Low income subsidy for Medicare Part D helps low-income seniors access medications they otherwise would not use. “A 2012 study compared two groups of seniors with similar commodities and found that seniors taking advantage of the LIS subsidy were significantly more likely to take medically necessary medications than the group not enrolled in the LIS program,” the report found.

The Maternal and Child Health Services Block Grant has helped reduce infant mortality and was rated “effective” by a 2008 OMB report.

Elderly Nutrition Program funds group meals and home-delivered meals for senior citizens. “By and large, studies have found that the program is well targeted towards the low-income elderly and to those with increased risk for nutrition and health problems,” the report says.

Supplemental Nutrition Program for Women, Infants, and Children provides adequate nutrition to pregnant women, infants, and children. “Most of the academic literature supports that the WIC program increases birth weights for low-income women,” the report concludes.

School Breakfast Program increases “both nutrition and academic achievement among low-income children,” the report says, even though “it doesn’t seem to increase the likelihood that a child will eat breakfast.”

Education For Homeless Children and Youth “provides funding for states to create programs to ensure homeless children and youth have access to public education.” The initiative improves “student performance,” studies find.

Child Care and Development Fund helps low-income families afford child care. The report agrees that the subsidies “increase the likelihood of participation in the labor force” and “encourage single mothers to pursue education.”

During AIDSWatch 2014, people living with HIV & AIDS, allies, friends, and loved ones will demand that Congress pass HR 1843 which will begin to modernize state and federal laws that criminalize and unfairly discriminate against people living with HIV & AIDS in the United States.

Legislation making major changes in the state’s law on the transmission of contagious and infectious diseases was approved 48-0 Thursday by the Iowa Senate.

Senate File 2297, which was sent to the House for consideration, is intended to revise a “badly outdated and draconian” law regarding the transmission of HIV, said Sen. Robert Hogg, D-Cedar Rapids, chairman of the Senate Judiciary Committee. The new law will apply to AIDS or HIV, tuberculosis, hepatitis and meningococcal disease.

The current law says that if someone exposes another person to HIV without that person’s consent, the person with HIV can be convicted of a Class B felony, punishable by up to 25 years in prison. Hogg said the present law was approved by lawmakers at a time when Americans were engaged in a hysteria over HIV and before it was known that treatment regimens could be used and appropriate precautions could be taken by people infected with HIV.

The legislation creates a revised law known as the Contagious or Infectious Disease Transmission Act and establishes crimes relating to it.

“What we are saying is that only if you intend to transmit it, and if you transmit it without the consent of the person, then you face the Class B felony,” Hogg said.

Otherwise, there are lesser penalties. In addition, there is an affirmative defense that people can use if they are doing everything their doctor has told them to do and they are doing everything that has been recommended to them by public health officials. “This is not a situation where if somebody has a disease, they have to wear a scarlet letter,” Hogg said. But at the same time, the legislation does not offer a “get out of jail free card.”

The legislation is supported by One Iowa, the state’s largest gay rights organization, and Community HIV/Hepatitis Advocates of Iowa Network, known as CHAIN. Also endorsing the bill were the Iowa attorney general’s office, American Civil Liberties Union of Iowa, the Iowa Coalition Against Sexual Assault, the Iowa Annual Conference of the United Methodist Church and the League of Women Voters of Iowa.

Sen. Charles Schneider, R-West Des Moines, supported the legislation. He said that when the justice system works best, the punishment is proportionate to the crime committed, which he believes isn’t happening now.

The legislation will encourage people to be tested and treated for infectious diseases, which will improve public health and safety, Schneider said. Furthermore, the bill will still address the most egregious cases and punish reckless transmission of diseases, he added.

Sen. Matt McCoy, D-Des Moines, said the Senate bill doesn’t make everyone happy, but he endorsed most of it. He thanked Republicans for joining Democrats in supporting the bill, saying, “We are sending a message that we will no longer stigmatize one particular group in our state.”

Supporters of the legislation cited the case of Nick Rhoades, who was diagnosed with HIV in 1998. Ten years later, he was on a potent medication that made his HIV viral load undetectable. A doctor told him he had a better chance of winning the lottery than being able to spread the virus to someone else. Rhoades wore a condom when he had sex with a partner. The other man was not infected, but the man later contacted authorities to press charges.

Rhoades was subsequently convicted and sentenced to 25 years in prison before his term was reduced on an appeal.

“This is a historic move by the Iowa Senate,” said Tami Haught, community organizer with CHAIN. She said she hopes for continued bipartisan support for the legislation in the House.

UNITEDNATIONS — After Uganda criminalized homosexuality, the White House immediately warned that the law would “complicate” the country’s relationship with Washington, and the Netherlands and Norway cut off bits of development aid.

When Nigeria banned same-sex unions and began arresting those it suspected of being gay, the European Union’s Foreign Ministry sternly reminded its president of his “obligations” under international law.

And after Russia passed a measure widely seen as an effort to squelch its gay rights movement, the United Nations secretary general, Ban Ki-moon, used his speech at the Winter Olympics to condemn attacks on gays and lesbians.

The issue of gay rights has catapulted up the diplomatic agenda in recent years, as international organizations have extended rights protections to gays and lesbians and donor nations have faced new challenges in dealing with governments that discriminate.

Antigay legislation is nothing new. The United Nations estimates that 78 countries ban homosexuality, and seven countries allow the death penalty for those convicted of having consensual homosexual relationships. Until a few years ago, the issue barely registered in diplomatic affairs. Global outcry was limited to protest petitions organized by gay advocacy groups.

“What’s unique about this moment is the compassion and public attention there is at the global level,” Jessica Stern, executive director of the New York-based International Gay and Lesbian Human Rights Commission.

But to what end?

Conservative governments around the world openly flout the warnings of international leaders, developing new measures to repress their citizens based on sexual orientation. There is little that international organizations like the United Nations can do, except issue statements of concern. And rich countries like the United States confront awkward new questions about how to handle important gay-bashing allies.

Take Uganda, for instance, the recipient of significant American aid, for both the military and development. The Obama administration has said it is reviewing its aid programs to Uganda, and Secretary of State John Kerry said Friday through his spokeswoman that he had spoken to the Ugandan president, Yoweri Museveni, to reiterate that message.

Mr. Kerry earlier likened the law to South Africa’s apartheid-era ban on interracial unions. So did South Africa’s influential Anglican archbishop emeritus, Desmond M. Tutu.

But whether the United States will impose punitive sanctions on Uganda remains to be seen.

American development aid includes funding for AIDS treatment, among other things. Military cooperation is aimed in part at the hunt for the warlord Joseph Kony and dealings with terrorist groups in Somalia. A senior administration official said Friday in an interview that United States policy objectives and the interests of Ugandans were being weighed in “a thoughtful, deliberate way.”

“We have not yet made decisions,” the official said, speaking on condition of anonymity because of rules against public discussion of internal talks. “We are working on this very intensively. There will be real consequences.”

At the United Nations, Mr. Ban expressed alarm. After meeting with the Ugandan envoy last week, Mr. Ban issued a statement calling on Uganda to revise or repeal the measure, a prospect that seems unlikely. Even the United Nations needs Mr. Museveni’s cooperation on many conflicts in and around Uganda, including the one in South Sudan.

For his part, Mr. Museveni has so far played to his domestic audience, rebuffing outside meddling and saying that his country would do fine without aid. There is plenty of aid to Africa coming from China, which tends not to wag its finger about human rights.

Mr. Museveni’s bluster also showed the limits of international influence and the backlash that international support can engender.

“It’s quite common, when you see a ratcheting up of pressure from domestic groups or foreign governments,” said Laurence R. Helfer, a Duke University law professor who studies international gay rights. “There is a period of counterreaction; we’re seeing that now.”

The turning point came in 2011, when the United Nations Human Rights Council passed a landmark resolution, led by South Africa, to extend human rights principles to lesbians and gay men around the world.

Mr. Ban became known as a forceful advocate. In January, he issued a statement about the Nigerian law, calling it a breach of fundamental human rights. He also posed for a photograph holding a placard that read, “Human rights are for everyone, no matter who you are or who you love.”

Around the same time, defending gay rights became a foreign policy priority for the United States and the European Union. European donors increasingly looked askance at countries that criminalized homosexuality. And last fall at the General Assembly ministers from 10 countries and the European Union endorsed the statement “Those who are lesbian, gay, bisexual and transgender (L.G.B.T.) must enjoy the same human rights as everyone else.”

It is another thing, though, to deal with countries that violate those principles.

Nigeria’s president, Goodluck Jonathan, signed into law in January a measure that effectively outlaws pro-gay organizations; since then, arrests of gay Nigerians have multiplied. The Obama administration condemned the law but has so far taken no concrete measures against Nigeria, one of its most important partners in West Africa.

The issue is divisive not only with Africa but also with traditional American allies in the Middle East like Saudi Arabia, where homosexuality is a crime.

After India’s highest court affirmed a criminal ban on homosexuality in December, the Obama administration did not specifically condemn the court decision, except to express its concern about measures that criminalized homosexuality.

It is something of a paradox that some of today’s antigay laws reflect considerable Western influence. American evangelists have played a crucial role in fomenting Uganda’s strong antigay sentiments. The Indian law criminalizing homosexuality dates to the early days of the British colonial era.

One of the most difficult issues for donor countries is whether to cut off aid, especially when it goes to promoting H.I.V. prevention and treatment in countries like Uganda.

As for the United Nations, the issue of gay rights remains so complex that its advocates are moving exceptionally slowly. There is no treaty that enshrines gay rights, for instance, and therefore nothing to hold countries accountable to. “There is a recognition that something is needed,” José Luis Díaz of Amnesty International said. “There is also a recognition that there is huge resistance, and you need to move ahead on this very, very carefully.”

The United Nations is no more than a collection of sovereign nations. And every country is free to enact its own laws, as Jan Eliasson, the deputy secretary general of the United Nations, pointed out, even laws that clash with principles of human rights.

“Our job is to diminish the gap between the world as it should be and the world as it is,” he said in an interview, adding, “Our mechanisms of enforcement are very limited.”

~ ~ ~ ~ ~

Calling All U.S.-based Advocates! Join the Global Day of Action on FRIDAY, MARCH 7 In support of Nigeria’s LGBT Community

What You Can Do To Participate:

Be There: Join advocates this Friday, March 7 from 11am-1pm ET at the Nigerian consulates in either NYC or DC:

The city that was once the deadly AIDS epicenter of the world is now striving to be AIDS-free. What does that mean, and why is San Francisco poised to achieve this goal the way no other American city could?

This all began with a visit to Ward 86, the nation’s oldest HIV/ AIDS clinic. Founded in 1983 at San Francisco General Hospital, Ward 86 was, for many years, a death camp with a dreamy view of palm trees and California sky. In the early ’80s, the average life expectancy of patients admitted there was 18 months—it was where people went to die. It was ground zero in America’s battle with AIDS, and where so much of the epidemic’s early iconography was crystallized: rag-and-bone bodies wasted from pneumonia or encephalitis, catatonia, seizures, bedside vigils. It seemed only appropriate to begin where the epidemic began. Jeff Sheehy, the ward’s communications director, is courteous but puzzled.

“There’s really nothing much to see,” he says. “It’s just a clinic.” Sheehy’s response would have been unimaginable 20 or 25 years ago, but something epochal has happened both in modern science and in the city of San Francisco. While there is still no cure for AIDS, and the rate of new HIV infections has remained relatively stable, the city is redoubling its assault on the disease that has claimed the lives of more than 19,000 of its residents. Inspired by Hillary Clinton’s 2011 speech at the National Institutes of Health, in which then-Secretary of State Clinton rallied for “an AIDS-free generation,” and emboldened by recent breakthroughs including PrEP and antiretroviral therapy (ART), San Francisco is committed to being the first city to reach zero—zero new HIV transmissions and zero AIDS patients.

There is fierce competition here, especially in the last decade as AIDS researchers have glimpsed a kind of epidemiological horizon. A cure seems all but inevitable. There’s the case of Timothy Ray Brown, the “Berlin patient” who was deemed functionally cured of HIV after receiving a 2006 stem cell transplant to treat leukemia. (Brown has since relapsed and returned to ART, but the treatment nevertheless renewed investigations into cures). There’s the announcement, made at the 2012 International AIDS Conference, that 14 French HIV patients who started an ART regimen months after infection subsequently quit taking the medication with no surge in their viral loads. In April 2013, London’s Daily Telegraph reported that a team in Denmark was experimenting with strategies to rout HIV from human DNA for the purpose of nuking it with immunotherapy. These are all milestones, and cities across the country have positioned themselves as beneficiaries—and, in some cases, architects—of the cure. San Francisco is arguably the most determined.

No one knows this better than Dr. Diane Havlir. She began her career at Ward 86 in the 1980s, a time she describes, somewhat demurely, as “extraordinarily formative years.” Today she is head of the ward and one of the nation’s leading HIV/AIDS researchers. In 2012 she co-chaired the International AIDS Conference in Washington D.C., whose theme, “turning the tide together,” and official declaration called unequivocally for ending AIDS. “Now, for the first time ever—we’ve never really said this before—we think we can begin to end AIDS,” Havlir said shortly before the conference.

Her optimism hasn’t faded. “It’s an exciting time,” she says. “We’ve all been re-energized by a couple of things. First, by the prospect that with earlier treatment and with PrEP we can dramatically reduce the number of new infections, and secondly, by the fact that a cure—that it can even happen—has been proven.” The case of the 14 French patients bolstered by early exposure to ART was compelling enough that last year, Havlir and her col- leagues at San Francisco General launched RAPID, a citywide program aimed at getting HIV patients on ART the same day they’re diagnosed. In some cases this means that healthcare workers escort patients to Ward 86 in a cab—what I imagine must be the most frightening and tender ride anyone can take through the city’s pastel hills. “The data would suggest that people who start treatment immediately after they’re infected will reduce the reservoir of HIV in their body, so if a cure were to become available, they’d be in a better position to benefit from it,” Havlir says.

And there’s the c word again. It’s a subsonic hum beneath any conversation about AIDS. The prospect of a cure is both intoxicating and unnerving, namely because failure is not an option. When the subject is raised with Havlir, she hedges. “No one can predict it. The fact that there is investment and commitment means it’s going to happen faster than it would have before, when we weren’t even thinking about it.”

Although there was never a time when AIDS researchers weren’t thinking about a cure, Havlir’s response indicates the extent to which it will demand deep institutional pockets. UNAIDS and the World Health Organization estimate that curbing new HIV infections—reducing transmissions, not a cure— would cost $20-$30 billion over the next half-decade. That’s a sobering tally, and perhaps one reason why local public officials, policymakers, and researchers eagerly posit San Francisco as the incubator for AIDS innovation. There’s a torrential, largely untapped artery of funds awaiting whatever city or institution offers a viable blueprint for significantly slowing transmissions or, better yet, unveiling a cure.

Havlir sees the treatment cascade as one of the city’s biggest opportunities to tout benchmarks. Sometimes referred to as the “continuum of care,” the treatment cascade is best visualized as an upside-down pyramid identifying stages of HIV treatment where patients are most likely to go AWOL. Of the 82% of people with HIV who are diagnosed, only 66% are linked to care, while 37% are retained in care. Thirty-three percent are prescribed ART, and 25% become virally suppressed. In San Francisco, viral suppression stands at 50%, a number that’s double the national average, though it’s still underwhelming to Havlir. “We can do much better than that,” she says, and goes on to envision a city in which diagnosis, treatment on demand, and outreach services such as housing, substance abuse counseling, and mental health counseling are integrated under one umbrella of care.

If this sounds like a rehash of the vintage “San Francisco model” of AIDS policy, in which a full menu of health and social services are combined under one roof, it is. Thirty years after the epidemic first broke and the model was introduced, it remains the gold standard of HIV/AIDS treatment. Justin Goforth, director of community relations at Whitman-Walker Health in Washington, D.C., praises San Francisco’s method of fast-tracking patients to care. It’s one his clinic has adopted and rebranded as the “red car- pet entry” program. “Our goal is to link all newly diagnosed individuals or new HIV-positive patients to care within 24–48 hours,” Goforth says. “Most of our newly diagnosed patients actually have the first appointment with their provider and other members of their new care team the same day of diagnosis.” That protocol mimics San Francisco’s RAPID program.

Goforth also mentions the role his clinic takes in crafting HIV campaigns that herald the not-too-distant day when D.C. is AIDS- free. “The newest prevention messages no longer include the word AIDS and speak only of HIV infection,” he says. Likewise, Randall H. Russell, CEO of the Seattle-based clinic Lifelong, frames his facility’s mission as making Seattle “an environment that will perpetuate an AIDS-free city.” Major HIV/AIDS organizations in Chicago, Los Angeles, and New York—and indeed all across the country—share the same goal. While finding a cure is a global, collaborative endeavor, wherever it happens is likely to become a tinderbox of enormous economic, political, and cultural capital. So why is San Francisco primed to take the jackpot?

According to Neil Giuliano, CEO of the San Francisco AIDS Foundation, the city’s notoriously liberal outlook is more congenial to progress. “We still have a ways to go in dealing with shame and stigma,” he says, “but I would venture to say we have gone much further than most other urban, and certainly suburban, communities in this country.” To prove his point, he hands me a sheaf of posters promoting the foundation’s various public forums. F*CK WITHOUTCONDOMSEVER? LET’S TALKABOUT IT, reads one. RAW SEX—ARE THERULESCHANGING? blares another in a burly, biohazard-colored font. “These are probably not posters that could go up in many communities around the country. It wouldn’t work in San Francisco if we tried to do any- thing that was other than very open, very honest.”

Giuliano is a relative newcomer to HIV/AIDS public policy. His résumé includes four terms as the openly gay Republican mayor of Tempe, Ariz.; four years as president of GLAAD; authoring a motivational memoir-cum-campaign-bio; a midlife conversion to the Democratic Party; and, since 2010, serving as CEO of the San Francisco AIDS Foundation. More recently, he’s moonlighted as the Great White Hope of Arizona politics. He seems to relish playing coy with the state’s media about a potential gubernatorial run. When I meet him at his office four stories above Market Street he’s rebounding from a nasty flu, which may explain his affable but somewhat prerecorded demeanor. He is accompanied by James Loduca, the foundation’s PR head, who chaperones our conversation.

“This was the first community where HIV was an epidemic in the United States,” Giuliano says. “It was in San Francisco, in the Castro neighborhood on Castro Street, where people literally dropped dead while walking down the street. We believe it will be in San Francisco, in the Castro neighborhood on Castro Street, where we will be able to say a new HIV infection is incredibly rare and we’re caring for people who have HIV. That’s it for us. That’s what we’re all about.”

In practice this means exceeding the goal established by the foundation’s board in 2010 to cut new HIV infections by 50% over five years. This target doubles that of President Obama’s National HIV/AIDS Strategy, also instituted in 2010, which calls for reducing new infections by 25%. San Francisco halved its number of new infections between 2004 and 2011, and now reports a little more than 300 new cases per year. The city hopes to trim that number by a further 25% this year. It’s an ambition many veteran HIV researchers dismiss. Dr. Matthew Golden, director of Seattle’s HIV/STD Control Program, deems such a downsizing in new infections as extraordinary. “Could San Francisco go down another 25% in the next five years? Maybe. In the next one year? No way,” he tells me.

Giuliano sympathizes with the skeptics. “We have an obligation to be aspirational,” he says. “Do I know that we’re going to hit that goal by 2015? I don’t know that we’re going to do that. One of the things I’ve learned in life is if you don’t set a high enough goal, you’ll certainly never come close to it.” (Behind him, a copy of Benjamin Barber’s If Mayors Ruled the World is displayed on his desk. In a 2012 interview with the Bay Area Reporter, Giuliano quipped, “Being mayor of San Francisco is a great gig, I wouldn’t mind that.”)

The centerpiece of the SF AIDS Foundation’s 2014 plan will be the ribbon-cutting for a new, $10 million gay men’s health and wellness center in the heart of the Castro. An architectural rendering is propped against the whiteboard in Giuliano’s office. It shows a glass-fronted cube inviting passersby into an interior of recessed lighting and Scandinavian furniture.

The facility, at 474 Castro St., will consolidate three separate agencies: Magnet, a sexual health clinic; the Stonewall Counseling Center; and the STOPAIDS prevention office. Its location in the Castro is a tactical move that acknowledges the city’s disproportionately high percentage of HIV-positive gay and bi men: 80% of the total HIV-positive population, by some measures. “There’s still a balance of maybe 60/40 gay and bi men to the general population in most other urban areas,” Giuliano says, a ratio that makes it difficult for other cities to hone treatment strategies. This is another reason why San Francisco has an edge when auditioning outreach initiatives: It’s a lot easier to monitor medical and behavioral intervention if your clientele is homogenous.

Still, neither the San Francisco AIDS Foundation nor the city itself denies that a variety of factors—including crystal meth and bareback sex—continue to spur infection in new communities. The average profile of a new HIV case in San Francisco is a gay, 34–35-year-old white man, but African Americans are increasingly at risk. That said, the city’s population is only 6% black, so that risk must be kept in perspective. San Francisco is nowhere near the emergency levels of Baltimore, Atlanta, or Washington, D.C., cities where black women in particular contract HIV at rates five times the national average. For Giuliano, the only plan that makes sense is a holistic health and wellness model that precludes fear. “The approach 10 years ago was ‘wear a condom, wear a condom.’ We’re way beyond that now,” he says.

San Francisco’s progressiveness can’t disguise a number of systemic flaws. Many of these aren’t unique to the city but are byproducts of America’s ramshackle economy, marked by income inequality, housing shortages, and unemployment. Michael Scarce, an activist and medical sociologist who has written two books about sexual politics, argues that these are the real blockades in San Francisco’s quest for a cure. “If you could choose one city that would be the first to become AIDS-free it could very well be San Francisco,” he says, “and yet all of the comorbidities and socioeconomic factors that intersect with HIV would need to be eliminated, if we’re going to truly be AIDS-free. I don’t know of that ever happening in the history of Western civilization.” High on the checklist of hurdles are poverty, substance abuse, and homelessness. “We can provide testing and treatment all we want,” Scarce tells me, “but if people at risk aren’t inspired and motivated to have lives worth living we can’t convince them to take advantage of something that might save their lives.”

Scarce has the bemused but edgy tone of someone who has made it out of the woods. “I’m not interested in body counts anymore,” he says, alluding to his own history of AIDS, drug addiction, and homelessness. Even now, he works two part-time jobs unrelated to his field and is trying to land a steady research gig. Three months ago he was served an eviction notice. He is burned out by PR buzzwords. “How are you going to save me if you don’t even know me or what my life is like? How are you going to help me get well? I’m not sure that I want to be saved. I just want a chance to save myself, and that’s a big difference.”

When asked what his ideal outreach model looks like, he replies that he’d like to see policy makers live a day in the life of someone with AIDS. Short of that, he’ll settle for more peer-based programs that actually administer to people with AIDS. In 2010, Scarce was interviewed by a French organization called the Warning. He used the opportunity to lambast the lack of transparency and general malaise among HIV/AIDS organizations and lobbied for the creation of a national watchdog agency. “In terms of fund- ing, Crisis = Money. Disease = Money. Risk = Money. The more AIDS organizations can portray their communities as unhealthy, sick, and high risk, the more they are rewarded financially and politically,” he said in the interview.

This is as good a time as any to point out that according to Charity Watch’s 2013 ratings guide, the San Francisco AIDS Foundation scores a C for how much it spends on programs and how much fundraising is required to raise $100. The foundation has the lowest grade of the eight AIDS organizations that are measured. There is also the matter of Neil Giuliano’s salary: $270,000 in 2012. The executive team, which in 2012 included seven members, earned a combined income of more than $1.3 million. The salaries are modest in comparison to some other nonprofits, but could they hint at a larger disconnect between organization heads and those they’d help? “When you talk about a 25% reduction in new infections, I start to zone out,” says Scarce. “A year from now I’m more worried about Am I going to have an apartment?”

In 2013, San Francisco’s housing market became the most expensive in the nation, with a median rent of $3,414. There was an 8% rent spike during a single quarter. Anxiety is palpable among long-time residents, especially since the past three years have also seen a 170% hike in Ellis Act evictions, which give retiring landlords carte blanche to evict their tenants. Gallons of ink and acres of bandwidth have gone into dissecting the city’s run- away gentrification, but little has been said about what it portends for San Francisco’s HIV/AIDS community.

Scarce sees the city’s elitism as just another reason he’ll fall through the cracks. “The city is still really behind wrapping its mind around homelessness,” he says. “When you don’t have a home, how are you supposed to get clean? How are you supposed to take your meds on a regular basis? How are you supposed to see your provider? And do you even want to do any of those things at that point?”

San Francisco is now in the uncomfortable position of having a cure within reach while being unable to offer it to many of the people who made it possible. It’s a bittersweet proposition. It’s also one that implicates front-line workers—nurses, benefits counselors, treatment advocates, case managers—who are often the lowest paid and most overworked. Scarce singles out Ellen at the San Francisco AIDS Foundation for special commendation: “God, I don’t know if I’d be here if it weren’t for her. She helped me and so many people I know in ways that are just mind-boggling. But you’re not interviewing Ellen. That’s not a criticism of you, it’s just the system.”

But should it be a criticism of anyone who presumes to talk about HIV/AIDS policy without first understanding the lives of people in the trenches? Politicians, CEOS, scientists, and researchers are all essential to orchestrating effective care, but their priorities, however well-intentioned, are generally light years away from those of people in the community. The story of HIV/AIDS is one that began on the street, and will hopefully end there as well. Whether a cure is discovered in San Francisco or some other charmed place, a happy ending is where the real demands of salvation must begin. “Personally,” says Scarce, “I would not want to be in San Francisco to hear champagne corks popping all over the city when seroconversions end and I’m living with AIDS on the street.”

For many years, the term “unprotected sex” has been synonymous with “sex without a condom,” and we’ve been told that the only real way for sexually active individuals to protect themselves from sexually transmitted diseases (STDs), including HIV, is to use a condom every time during sex.

Though we know everyone hasn’t followed this advice, the idea became so ingrained in our conversations about safer sex that it was clear protected sex equaled sex with a condom, while unprotected sex equaled sex without one. Some HIV advocates argue, however, that in this day and age of HIV treatment, pre-exposure prophylaxis (PrEP), and behavior changes that can decrease risk, this language is no longer accurate or precise. To that end, in December, a group of advocates, spearheaded by the HIV Prevention Justice Alliance, sent a letter to the Centers for Disease Control and Prevention (CDC) requesting a terminology change.

In January, the CDCannounced on a call with more than 80 advocates that it would indeed change the decades-old language. Now, instead of referring to “unprotected sex” to mean sex without a condom, the CDC will refer simply refer to it as “condomless sex.”

The advocates’ argument hinges on the fact that there are now multiple ways to have safer sex when the goal is preventing HIV transmission. Condoms obviously still play an important role, but there are other ways individuals can protect themselves as well. Many HIV experts, for example, talk about treatment as prevention. Individuals who are on antiretroviral therapy (ART), which suppresses the replication of HIV, often have an undetectable viral load (a measure of the number of copies of HIV in a given blood sample). Though it is possible to transmit HIV even when one’s viral load is very low, it is much less likely.

Another, newly available prevention method for HIV is referred to as PrEP. In 2011, the Food and Drug Administration (FDA) approved the use of an existing HIV medication called Truvada, a once-daily pill designed to prevent infection. Studies have shown that it is effective. For example, one study among men who have sex with men (MSM) found that those who were given PrEP were 44 percent less likely to contract HIV than those who weren’t. Moreover, those who remembered to take their medication every day or almost every day saw a reduction in risk of 73 percent or even more (some up to 92 percent). Similar studies of HIV discordant, heterosexual couples found that PrEP reduced the risk of the uninfected partner becoming infected by 75 percent, or as much of 90 percent among those who took the pill every day or almost every day.

Advocates also note that some couples, men who have sex with men in particular, use practices knows as serosorting and seropositioning to reduce their risk. Serosorting essentially means limiting condomless anal intercourse to those partners with the same HIV status as themselves. The CDC, however, does not consider this to be a safer sex practice:

Serosorting is not recommended because: (1) too many MSM who have HIV do not know they are infected because they have not been tested for HIV recently, (2) men’s assumptions about the HIV status of their partners may be wrong, and (3) some HIV-positive men may not tell or may misrepresent their HIV status. All of these factors increase the risk that serosorting could lead to HIV infection.

Seropositioning is the practice by which men who have sex with men choose their position (as the insertive or receptive partner) based on sero-status; the HIV-positive partner would be receptive, as there is less risk that he transmits HIV in that position. Again, this assumes partners have accurate knowledge of their own and each other’s status.

Though there is some disagreement over the safety benefits of these behavioral practices, there is agreement that the landscape of HIV prevention has changed. Suraj Madoori, coordinator of the HIV Prevention Justice Alliance at the AIDS Foundation of Chicago, told RH Reality Check via email that the language change “opens doors for us to discuss the myriad of challenges and progress on effective methods of HIV prevention. By continuing to use ‘unprotected sex’ to mean ‘condom-less sex’ you fail to acknowledge and lose the breadth of the entire prevention narrative in how individuals and groups choose to protect themselves and mitigate risk.”

Jim Pickett, director of prevention advocacy and gay men’s health at the same organization, said in an email, “Of course, there are gradations of risk and safety. The only truly ‘safe’ act is to not have sex, right? Anything else has some level of risk—even oral sex (though you are more likely to get hit by lightning twice than get HIV from oral sex).”

A spokesperson for the CDCtold the Bay Area Reporter that the changes have been under assessment for some time because, as “HIV prevention strategies evolve, the terminology needs to evolve as well.”

Other HIV experts welcomed the change as well. Dr. Kenneth Mayer, medical research director and co-chair of the Fenway Institute at Boston’s Fenway Health, told the Reporter, “Unprotected sex conveys a sense of irresponsibility that may not accurately reflect a person’s decision about how to avoid HIV and other STD’s.”

“For example,” he added, “someone in a committed monogamous relationship may decide not to use condoms after having been screened for HIV and STDs, and coming to an agreement with a partner about not engaging in intimate relations with others. It would be rare to refer to a heterosexual couple trying to conceive as engaging in ‘unprotected sex.’”

Ultimately, this change holds the opportunity to shift the conversation in the gay community about clean and dirty gays, and good and bad gays — and instead put the focus on actual risk and prevention.

How this language change will play out in the long term is not yet known. For example, it’s not clear whether the CDC will continue to use the phrase “unprotected sex” to refer to sex in which no HIV prevention methods are used or when discussing STDs other than HIV, or whether it will simply retire the term altogether. The HIV Prevention Justice Alliance says it plans to meet with the agency later this month to discuss the change further.

It is also not clear how the rest of the public health community, specifically those who focus on other STDs, will react to the change or how likely they will be to adopt it, as the new prevention methods it is designed to include apply only to HIV. Condoms still remain the only way for sexually active couples to reduce their risk of chlamydia, gonorrhea, syphilis, and other diseases, which means that sex without a condom leaves individuals unprotected against these diseases. Moreover, many public health experts have feared that as alternative HIV-prevention methods become more popular among men who have sex with men, condoms will become less popular, leaving men open to other STDs. A recent study, however, shows that this fear may be unfounded, as people on PrEP were not more likely to engage in risky sexual behavior. That said, rates of other STDs are on the rise, and men who have sex with men are disproportionately affected.

It will be interesting to see how the new language becomes incorporated in messages about HIV and other STDs and if other organizations will follow the CDC’s lead.

We have reached a critical hour in the fight for social justice and human rights for Ugandans. On February 14th, President Museveni announced his intention to sign the Anti Homosexuality Bill into law. He hid behind quack science released in the form of a ‘Scientific Statement on Homosexuality’ endorsed – alarmingly – by his own Ministry of Health.

This Bill is considered unconstitutional by Ugandan legal and human rights experts including the Ugandan Human Rights Commission and the Uganda Law Society. It would inflict harsh punishment on lesbian, gay, bisexual and transgender Ugandans – up to life in prison for “aggravated homosexuality” – and would make it a crime to “promote” or “aid or abet homosexuality” – punishable by up to 7 years’ imprisonment. Efforts to ensure lesbian, gay, bisexual and transgender Ugandans get access to essential health services and understand their legal rights would be criminalized. Beneficiaries of such programs as well as the organizations and individuals providing those services would become vulnerable to arrest, prosecution, fines, and lengthy prison sentences. Uganda’s fight against critical health priorities, such as HIV, would be sabotaged by passage of this Bill into law.

Ugandan civil society is requesting that President Obama and other governments take action now in response. They are calling for the U.S. Ambassador to be recalled to Washington DC for strategic consultation. This temporary recall would send a strong message to President Museveni that the U.S. is standing by its commitments. They are calling for the same action for the U.S. Ambassador to Nigeria – a country where passage of a similar bill into law is already leading to a surge in persecution and violence.

We need you to take action urgently and join their call for Secretary of State John Kerry to recall U.S. Ambassador Scott DeLisi. This temporary recall is an appropriate next step as we fight back against the Anti Homosexuality Bill. Will you take action today?

Hello, my name is ——————————— and I am calling to urge Secretary Kerry to take immediate action on Uganda’s Anti-Homosexuality Bill, and recall the U.S. Ambassador to Uganda, Scott DeLisi. The Ugandan Civil Society Coalition on Human Rights and Constitutional Law has requested the recalling of U.S., European and other Ambassadors, for urgent consultations about the way forward for human rights in Uganda as well as in Nigeria, where a similar bill was signed into law by the President. I stand with Ugandan Civil Society concerned about the safety of their LGBTQ citizens, and strongly urge Secretary Kerry to recall U.S. Ambassador Scott DeLisi immediately.

2. Want to make another call? Leave a comment for the Secretary on his comment line. Call 202-647-5291 and then dial “1”, followed by “8” to leave a comment.

The State Department is in active consultation about their next steps, and your call will make a difference in the fight against bigotry and homophobia, and for human rights and access to essential services for all Ugandans.

New Online Site, HIV-Age.org, Brings Together Resources, Research and Best Practices for Treating Older HIV Patients

Washington, DC: The American Academy of HIV Medicine (AAHIVM), ACRIA, and the American Geriatrics Society (AGS) today launched HIV-Age.org, the GO-TO online site for clinicians seeking best practices for managing the care of older HIV patients. By 2015, half of the U.S. HIV population will be age 50 and older. Other individuals, such as patients, researchers, media and HIV advocates, will also find the content and resources useful in understanding the latest in managing the care older Americans with HIV.

The website is a continuation of the HIV and Aging Consensus Project, developed to assess how the presence of both HIV and common age-associated diseases alter the optimal treatment of HIV, as well as other co-existing medical conditions. As part of this project, in 2011, AAHIVM, AGS and ACRIA released the first clinical treatment strategies for managing older HIV patients: Recommended Treatment Strategies for Clinicians Managing Older Patients with HIV. The report, developed by a panel of experts with experience in the fields of HIV and Geriatrics, provided guidance for HIV clinicians and other health care providers who treat, diagnose and refer older patients with HIV disease.

“HIV-Age.org is the natural next step in the mission to provide HIV care providers with the information, tools and resources needed to best manage the health of their older HIV patients,” stated James M. Friedman, executive director of AAHIVM. “This website will be a virtual environment of clinical information and colleague support.”

HIV-Age.org will include editorials by leading clinicians, researchers and thought-leaders in the field, scientific spotlight articles on the latest research and treatment options, thought-provoking case studies and useful medical and government resources and links. For instance, the current Scientific Spotlight piece discusses the availability of “The Quick Reference Card for Managing Older Adults with HIV” now available through the New York State Department of Health (NYSAIDS Institute).

An extensive listing of published articles on HIV and Aging for the last two years will allow any site visitor to become rapidly informed. The site requires no membership and encourages comment and ongoing dialogue.

HIV-Age.org will also house the original 2011 Recommended Treatment Strategies for Clinicians Managing Older Patients with HIV report with timely updated sections with the goal of keeping the report relevant and scientifically up-to-date. At launch of the site, nine of the 22 chapters have been updated.

“This type of content will encourage discussion among the HIV community, including medical providers seeking strategies for tackling some of the more complicated treatment scenarios,” stated Dan Tietz, executive director of ACRIA.

In 2006, 26 percent of HIV-infected adults in the U.S. were at least age 50, and in 2013 estimates place that number at almost 44 percent. Furthermore, the most recent data from the Centers for Disease Control and Prevention (CDC) shows that individuals in that age group accounted for 1 in 6 new HIV diagnoses each year.

“Thanks to medical advances, people with HIV are living longer,” stated Wayne McCormick, MD, President-elect of the AGS Board of Directors. “But with living longer comes more questions on the management of the common co-morbidities associated with aging. We have a responsibility to not only help people live longer, but live better with proper care and treatment.”

The development of HIV-Age.org was made possible through generous support from The Archstone Foundation. The grant was awarded to the American Academy of HIV Medicine to administer this program.

To arrange an interview with a representative from AAHIVM, AGS, or ACRIA, please contact Amber McCracken at 202-659-0699 ×13 or amber@aahivm.org.

# # #

ACRIA for more than 20 years has transformed lives and strengthened communities affected by HIV in the U.S. and around the world through research, education and advocacy. Through its ACRIA Center on HIV & Aging, the organization is recognized as an international leader on the emerging issue of HIV and older adults.

The American Academy of HIV Medicine (AAHIVM) is a professional organization that supports the HIV practitioner and promotes accessible, quality care for all Americans living with HIV disease. Our membership of HIV practitioners and credentialed providers give direct care to more than three-fourths of HIV patients in the US.

The American Geriatrics Society (AGS) is a not-for-profit organization of close to 6,000 health professionals devoted to improving the health, independence and quality of life of all older people. The Society provides leadership to healthcare professionals, policy makers and the public by implementing and advocating for programs in patient care, research, professional and public education, and public policy.

Update: 7 PM ET, Monday, February 14: BCBS of LA released a statement saying they are reviewing the CMSFAQ released Friday, February 7. However, the statement reiterates their current policy that they will not take Ryan White premium payments.

Given the coverage gaps that still exist for people with HIV/AIDS, these individuals still need help paying for their share of premiums, even after federal subsidies. However, some insurers – most notably Blue Cross Blue Shield of Louisiana (BCBS) – have refused premium payments from the Ryan White Program.

Ensuring that people living with HIV/AIDS receive Ryan White support is important in all states, but more so in ones like Louisiana that did not expand Medicaid to cover the lowest-income people with HIV.

BCBS’s actions first received national attention when the HIV Health Care Access Working Group wrote to the company on January 27, 2014, urging it to accept third-party premium payments from the Ryan White Program:

Ryan White Program/ADAP insurance assistance programs that assist qualified low income clients with the purchase of health insurance are explicitly allowed (and encouraged) by the Health Resources and Services Administration (HRSA), the federal agency that oversees the Ryan White Program, as well as the Center for Consumer Information and Insurance Oversight (CCIIO).

Hundreds of people with HIV/AIDS in Louisiana trying to obtain coverage under President Barack Obama’s healthcare reform are in danger of being thrown out of the insurance plan they selected in a dispute over federal subsidies and the interpretation of federal rules about preventing Obamacare fraud.[…]

The state’s largest carrier is rejecting checks from a federal program designed to help these patients pay for AIDS drugs and insurance premiums, and has begun notifying customers that their enrollment in its Obamacare plans will be discontinued.

HIV/AIDS advocates have taken to social media outlets such as Twitter using the hash tag #bcbsfail to voice their disapproval of the BCBS practices.

Earlier guidance from CMS has contributed to confusion on the issue. In November 2013, CMS issued a FAQ document encouraging marketplace plans to reject payment from third parties such as hospitals, other health care providers, and other commercial entities. The FAQ did not mention the Ryan White Program.

However, on February 7, the same day they received inquiries from the media, CMS clarified that the agency was not referring to the Ryan White Program in the November statement. CMS released a FAQ on February 7 saying that health plans and “marketplaces are encouraged to accept such payments.” An agency spokesperson noted, “Given the importance of access to care for people with HIV/AIDS, CMS is considering amending those rules to require issuers to accept these [Ryan White Program] payments.”

Amending federal rules may be a lengthy process. To spur more immediate action, Lambda Legal and AIDSLaw of Louisiana on February 10 filed a legal complaint against BCBS urging them to accept Ryan White Program premium payments. The four-page letter notes that refusing these payments “acts as a potent device to keep people living with HIV from BCBS’s insurance rolls”:

Not only is BCBS ’s unfounded policy jeopardizing the lives of Louisiana residents living with HIV, but we are concerned that BCBS in fact is engaged in actionable discrimination in violation of the ACA (as well as potentially running afoul of other federal and state laws)… We fear that BCBS’s abrupt and suspect decision to reject [Ryan White Program] premium subsidies amounts to discrimination in violation of the federal law.

VOCAL-NY, Housing Works, and AIDS community leaders who are at the forefront in the fight to end the AIDS epidemic in New York State by 2020 have been fighting for the 30% rent cap, which will ensure that poor individuals and families living with AIDS and HIV have their rents capped at no more than 30% of their income, for 20 years. In light of that, today’s announcement by NYC Mayor Bill de Blasio during his budget address—that he and Governor Cuomo have reached an agreement for an affordable housing protection for low-income New Yorkers living with HIV/AIDS—is a promising sign of what we can accomplish if we work together. Both officials have stepped up and done what their predecessors refused to do and for that, they are to be commended.

Also to be applauded is Deputy Director for State Operations Fran Reiter, who has been the biggest government advocate in making this moment happen. Without Reiter’s intervention and the support of many individuals at both the state and city levels—Nirav Shah, Sue Kelly, Courtney Burke, Louise Chafee, Dan O’Connell, Lilliam Barrios-Paoli, Dean Fuleihan, Melissa Mark-Viverito, Stephen Levin, Emma Wolfe, Tom Duane, and Deborah Glick, among others—the 30% rent cap agreement wouldn’t have happened. Given that Fran Reiter’s past relationship with Housing Works during her years as New York City Deputy Mayor under Mayor Giuliani was often contentious, this policy shift is also an illustrative example of how relationships with a history of conflict and disagreement can evolve and become assets.

The moment of triumph is particularly sweet for Housing Works. The organization successfully brought a 2006 30% rent cap lawsuit to federal court, and forced the City to honor the cap for those in federal funding, after they announced an end to honoring the cap. Housing Works also went on to write the 30% rent law at issue, and its advocacy staff has worked with allies for decades to lobby for its passage.

New York City will pay roughly two-thirds of the cost of the new policy, and New York State will pay the remaining one-third. Over time, with the large cost savings from decreasing emergency housing placements and improved health outcomes, the policy is expected to pay for itself. Without this long-awaited protection, the 12,000 New Yorkers living with HIV/AIDS will continue to pay upwards of 70 % of their disability income toward their rent. For an eloquent reminder of what trying to live like that really means, we need look no further than Housing Works client and advocate Keith H., who responded to the announcement with relief and renewed optimism. “This is a huge, long overdue victory,” he said. “I’m one of the 12,000 people in New York who has been on the brink of becoming homeless. After paying more than 70% of my income in rent, I have had to struggle to live on the $11 a day that’s left. I have had to choose between my basic needs—eating, meds, a doctor’s appointment. That’s no way to live.”

Housing Works President and CEO Charles King echoed Keith H. and saw the news as an opportunity for continued progress: “As the Housing Works community has chanted in protests for decades, AIDS housing saves lives. The NYS-NYC 30% rent cap agreement is a big victory, 20 years in the making, and a concrete down payment on New York leading the way in the larger goal of ending AIDS. This moment is exactly why the relentless advocacy that’s part of the Housing Works mission is at the core of everything we do.” In practical terms, finally achieving the 30% rent cap means we must keep the pressure on and push for the other critical items missing from the Cuomo budget:

? a task force dedicated to creating a roadmap to end the AIDS epidemic in New York State by 2020

? a $10-million placeholder in the AIDS Institute’s budget to serve as seed money for the task force’s plan to end AIDS

? an end to the current police practice of using condoms as evidence of prostitution

? the decriminalization of syringe possession

“Today represents one important step in making the end of AIDS in New York a reality,” King said. “It’s up to us to stay on the path and ensure that we reach that destination.”

(Reuters) – The U.S. Centers for Medicare and Medicaid Services (CMS), in an effort to keep insurers from denying coverage to people with HIV/AIDS, may strengthen its position on health plans accepting third-party payments, such as those under the 1990 Ryan White Act.

Hundreds of people with HIV/AIDS in Louisiana trying to obtain coverage under President Barack Obama’s healthcare reform are in danger of being thrown out of the insurance plan they selected in a dispute over federal subsidies and interpretation of rules about preventing Obamacare fraud, Reuters reported on Saturday.

Blue Cross and Blue Shield of Louisiana, the state’s largest health insurer, is rejecting checks from a federal program designed to help these patients pay for AIDS drugs and insurance premiums, and has begun notifying customers that their enrollment in its Obamacare plans will be discontinued.

The insurer insists it is not trying to keep people with HIV/AIDS from enrolling in one of its policies under the Affordable Care Act, but is instead rejecting third party premium payments in an effort to prevent potential fraud.

“Federal rules do not prevent the use of Ryan White funds to pay for health care plans,” CMS said in a statement late on Saturday, adding that it had issued guidance “encouraging issuers and Marketplaces to accept such payments.”

CMS suggested that such encouragement may not be enough to protect patients in need of expensive life-saving medicines.

“Given the importance of access to care for people with HIV/AIDS, CMS is considering amending those rules to require issuers to accept these payments,” the lead Obamacare agency said.

The 1990 Ryan White Act offered people with HIV/AIDS federal financial help in paying for AIDS drugs and health insurance premiums, especially in state-run, high-risk pools. Obamacare, which bans insurers from discriminating against people with preexisting conditions, was designed to replace these high-risk pools.

Hundreds of HIV/AIDS patients are dependent on Ryan White payments for Obamacare because they fall into a coverage gap. They are not eligible for Medicaid, the joint federal-state health insurance program for the poor, because Louisiana did not expand the low-income program, and Obamacare federal subsidies don’t kick in until people are at 100 percent of the federal poverty level.

n 1981, we were looking for the first symptom of a disaster that we feared would come. The Reagan administration had proposed huge cuts in health programs, and something had to give.

Back then, Henry Waxman—who has just announced his retirement after four decades representing his California district in Congress—was a relatively new chairman of the Subcommittee on Health and the Environment. He had asked his staff to be on the lookout, and we were. Maybe it would be a cohort of birth defects? Maybe an environmental spill in drinking water? I was an assistant counsel two years out of law school, working on the public health portfolio. I thought the disaster would be infectious diseases among children, since the budget called for cutting immunization support effectively in half (a proposal eventually rejected on a strong bipartisan basis after a Waxman oversight hearing during which a Nobel laureate showed slides of polio victims in iron lungs).

But instead, a medical investigator at the Centers for Disease Control (CDC) told me about a new and fatal disease. The first reported cases were in Chairman Waxman’s hometown of Los Angeles. They were among gay men (and Waxman represented West Hollywood, the gay ghetto of that city). CDC said they didn’t know what to say yet, but they’d keep us posted. We kept watching.

The new disease started showing up in other places. People were dying and no one knew why.

Waxman called the first hearing on this outbreak and the need for a federal response in April 1982. The extent of the disease was unknown, its causes unknown, its means of transmission unknown. There were 300 reported cases and 100 deaths. Over the decade, he held hearing after hearing as it became clear that this was an epidemic and not a one-time outbreak. This was AIDS, and it was the disaster we had feared.

New symptoms were outlined, new sub-populations were identified and new theories were advanced. Thousands of Americans died, most of them gay men. The Reagan administration’s budgets stayed stubbornly static. It took five years for the president even to acknowledge that an epidemic existed. By the time he did, about 2,000 new cases were reported a month, and the rate was accelerating.

In formal statements, the Department of Health and Human Services told Congress that everything that needed to be done was being done. But the plain brown envelopes that came to the subcommittee offices (this was long before email and everything was hard copy) contained a different message. The epidemiologists, the virologists, the oncologists, the immunologists from within CDC and the National Institutes of Health were quietly telling us they needed new studies and professional reinforcements. Public Health Service officials had proposed emergency supplemental funding repeatedly. Reagan appointees had regularly turned them down.

Waxman himself became nearly a board-certified specialist in immunology. The scientists often briefed him directly. He chaired hearings on incidence and prevalence, antibody tests, immune cells and anti-viral drugs. He met with people living with AIDS, even as others were calling for quarantine and wearing rubber gloves.

His advice to his staff stayed the same throughout: We should act as though we were colleagues of the public health professionals, except that we did not have to obey Reagan’s budget bosses. We were to look for research undone, surveys not conducted and staff jobs unfilled, and we were to bring the information back to the Congress for yet another hearing.

The subcommittee proceedings were a roller coaster from indifference to panic to indifference again. One day there were no members in the AIDS hearing at all, just the chairman presiding. The next day there were so many cameras that the networks had to band together to pool the feed of live testimony. One day there were slide presentations about white blood cells. The next day there was Elizabeth Taylor. One day there was a witness saying that he thought AIDS was spread by spores. The next day there was Surgeon General C. Everett Koop saying that this was not the flu and could not be easily transmitted.

But Waxman stayed the course: “What did the public health people say should be done next?” he asked us over and over. Along with the late Ted Weiss, who chaired investigations in a subcommittee of what is now Oversight and Government Reform, he led hearings into topics that needed to be discussed but could not then be mentioned in “polite” company. Oral and anal sex. Injection drugs. Prostitution and commercial sex work. (I’d add personally that no staff counsel expects the day he will have to explain to members of Congress what mutual masturbation is and why it is unlikely to share body fluids.) These were the thankless subjects—along with budget shortfalls and vacant lab positions—that Waxman and Weiss steered the Congress through. Reagan and most other politicians didn’t say a thing, even as projections came that more Americans would die from AIDS than had died in Vietnam.

Waxman didn’t just hold hearings on the AIDS crisis; he pushed through legislation for public education, biomedical research and health-care delivery. Other members added amendments to ban condoms, clean needles and safe-sex comic books. Confidentiality and non-discrimination protections were unfortunately deleted. Many in Congress told him that they knew he was right on the issues but that they just couldn’t face the sound-bites at home about sex and drugs. Others, both Republican and Democratic, took politically courageous votes in the cause of public health. It’s easy to forget now, but in the 1980s, AIDS and everything associated with it was politically radioactive.

Books, plays and movies have been written about how the country and the world suffered through those days, from personal tragedies to protest in the streets. But I cannot imagine how much worse the AIDS epidemic would have been (and would be now, because it is far from over) if it had not been for this smart, steady, quick study of a man who stayed for hours in the chair, assembling the record and hammering out bipartisan legislation.

For me, one small moment brings his role together: a TV interview in his Rayburn office. I’d written the talking points about all the questions the producer had told me she wanted to ask the chairman, but she took the moment to spring a new one on him: “Isn’t it true that you are working on this issue only because you represent homosexuals?” Needless to say, I hadn’t prepared him for this.

Waxman paused and then replied, “No, but would it be so wrong if that were true? You don’t question why members from Pennsylvania represent steel workers. But actually I work on this issue because it’s the largest public health crisis of our time, and I chair the subcommittee on health. Also, I work on this issue because I am a Jew, and I understand what it means if your society doesn’t care if you live or die.”

Only someone with these answers could have led the United States through the politics of inertia and hatred and through the complexity of facts and figures. We are lucky to have had him there and then. I’m sorry he’s retiring now. I pray that leaders with this clarity and compassion will be there when the country needs them next.

Timothy Westmoreland is now a visiting professor of law and a senior scholar in health law at Georgetown University Law Center. He was a staff member of the Subcommittee on Health and the Environment from 1979 through 1994. The views presented are his own.

Her biggest hope is that a cure will come soon. But either way, Lauryn Taylor will make the 45-minute bus ride to take part in the Women’s Interagency HIV Study for as long as she lives.

Maybe it’ll make a difference in her life. Maybe it won’t. But, if her showing up twice a year will help scientists better understand why women are more susceptible to the deadly virus, if it will keep her 20-year-old daughter and other people’s children safe, Taylor said she intends to do her part.

“I’ll do it as often and for as long as I need to,” she said.

Taylor is one of 40 women age 18 and over — some who HIV positive and some who are at risk of becoming infected — currently enrolled in the study. Emory University researchers are hoping to recruit 260 more.

The study, which launched Oct.1, is the National Institutes of Health’s response to the growing HIV/AIDS epidemic in women.

“When the epidemic first broke in the ’80s, women in the U.S. comprised only 8 percent of people with HIV/AIDS,” said Dr. Igho Ofotokun, an associate professor of medicine at the Emory University School of Medicine and one of the lead researchers of the study. “Two decades later, nearly 25 percent of all people living HIV/AIDS are women in the U.S.”

Although the south has long been a breeding ground for the deadly disease, this is the first time in the two decades since the WIHS was firstlaunched in 1993 that research sites have been located here. Atlanta is one of four new southern sites, a recognition of the epidemic’s disproportionate impact on women here. The others are located in Miami, Birmingham and Chapel Hill, N.C.

Ofotokun said that he and partner Gina Wingood, a professor of behavioral sciences and health education at the Rollins School of Public Health, were told from the outset that approval for a local site was an uphill battle, but they persisted because both he and Wingood had spent much of their careers working with HIV-infected women like Taylor.

“We were convinced there were no others like us,” Ofotokun said. “This was our life, and we felt there was no better place for this work than Atlanta, where the epidemic just happens to be raging. We have the largest number of AIDS cases in the southeast.”

There are an estimated 14,000 women living with HIV/AIDS in Georgia. Fifty-six percent of those live in Atlanta.

“What is scary is these are women of child bearing age, and they can transmit the disease to their offspring,” Wingood said

Under Ofotokun’s and Wingood’s guidance, researchers will conduct detailed clinical, neurocognitive, behavioral and genetic assessments in hopes of understanding HIV progression in women and what specific factors, such as biology, stigma, medical distrust and social behavior, increase women’s vulnerability to infection.

“Women are more likely to become infected compared to men,” Wingood said. “The question I ask myself as a scientist is what makes them more susceptible?”

Taylor, 45, of Decatur, has been under Ofotokun’s care since learning of her diagnosis three years ago.

“It was Dec. 14, 2010,” she said. “I got in my car and I cried and screamed and cursed for about 15 minutes. Then I just absolutely engorged myself with information about the disease.”

It was the same way, Taylor said, when she learned about WIHS.

“I’m a paralegal by trade, so naturally I started doing some research,” she said. “I was really excited to find out that the study was backed by the NIH and the focus was how the virus affects women.”

One of the strengths of the Atlanta site, Ofotokun said, is the relationship it has forged with its community partners, SisterLove, AidAtlanta, the Center for Black Women’s Wellness and others.

“They have been part of helping us develop operations, how to recruit women, in every decision we make,” he said.

Dazon Dixon Diallo, president and CEO of SisterLove, said the local non-profit decided years ago to become more directly involved in institution-based research.

“We wanted to be a local leader on that, and so we were very intentional about working with Emory researchers and other local institution,” she said. “We started out just being a partner in community education, educating people about clinical trials and what works, what trials are available, then built our own capacity to conduct research, which elevated us to become a partner in the research itself.”

Diallo said the agency encouraged Emory to apply for the NIH funds — $12 million over 5 years — and assisted with writing and submission. The study is being conducted at the Grady Infectious Diseases Program Clinic (The Ponce Clinic) and the Woodruff Extension Building at Grady Emory Campus.

“What really drove us is the concentration of women with HIV in the south,” she said. “For many women in the study, it will be a lifetime of state-of-the-art health care, the Cadillac of every thing you will need living with HIV but don’t have the means to pay for health insurance. As part of the research protocol, they will be evaluated twice a year and may be screened for cancer, hypertension, cardiovascular disease and even violence from their entry into the study until they die. That’s what makes this so powerful.”

Diallo said that, for a lot of women in the study, participating will be a chance to feel like they are part of the solution to ending the epidemic.

Taylor said she intends to be completely involved in as many aspects of the study as she can and hopes people who may be at risk of the disease, or naïve about how it’s transmitted, will begin to protect themselves.

“I have a 20-year-old daughter and since HIV has been renamed a chronic condition instead of a death sentence, I feel like her generation, in particularly, no longer takes it seriously,” she said. “This is not like a cold. It does not go away, so why gamble? Every time you have unprotected sex, you are playing Russian roulette with your life.”

Taylor and researchers say WIHS holds much promise for women, if for no other reason that it will inform U.S. policy on HIV/AIDS.

“We can win the fight against AIDS, and this study will give us the tools to begin to understand the factors that will eventually help us,” Ofotokun said.

Additional information about the Atlanta WIHS, contact the project director, Sara Sanford, at sesanfo@emory.edu, or call SisterLove at 404-254-4734.

NEWYORK, Feb. 3, 2014 /PRNewswire/ — The Elton John AIDS Foundation (EJAF) announced an educational grant to The American Fertility Association (AFA), for the purpose of increasing awareness of family-building options for HIV-positive men and women. This work was initiated in 2012 with the assistance of Growing Generations and International Fertility Law Group.

The campaign will focus on two underserved locations in the Southern United States and will utilize a social media campaign and a web-based, individualized pathway to parenthood for HIV-positive individuals, to be hosted on The AFA’s website, including resources for both men and women with HIV considering pregnancy. The campaign will also feature a seminar for professionals on HIV family-building options to educate the medical community on the science and issues involved. In every stage, collaboration with local agencies will be at the forefront.

“We’re honored to have support from Elton John AIDS Foundation to help bring hope and awareness to those living with HIV and desiring to safely have biologically-related children,” said Ken Mosesian, Executive Director of The American Fertility Association. Mosesian continued, “This work will also give us the platform from which to speak about the continued need for HIV prevention, including condom use.”

“Over the years, advancements in drug therapy and treatment have changed the lives of many people living with HIV/AIDS, making it possible for them to live longer, fuller, healthier lives,” said EJAF Executive Director Scott Campbell. “HIV-positive people are entitled to be a vital part of our society, just like everyone else. Thanks to groundbreaking advancements in fertility science, there is no reason that children shouldn’t be part of that equation. EJAF is proud to join with The AFA in championing the human rights of people with HIV, including their right to have families of their own.”

At the Elton John AIDS Foundation (EJAF), we believe that AIDS can be beaten. We act on that belief by raising funds for effective programs and policies, and also by speaking out with honesty and compassion about the realities of people’s lives. Sir Elton John created EJAF over twenty years ago, first in the United States in 1992 and then in the United Kingdom in 1993. Through hard work and with the help of our network of kind, amazing, creative, and generous friends and supporters, the two foundations together have raised more than $300 million over the past two decades to combat stigma, prevent infections, provide treatment and services, and motivate governments to end AIDS. The U.S. foundation focuses its efforts on programs in the United States, the Americas, and the Caribbean, while the U.K. foundation funds HIV-related work in Europe, Asia, and Africa. Join us in speaking out, taking action, and contributing to our efforts to achieve a world without AIDS. For more information, please visit www.ejaf.org.

The information on this page is provided by PR Newswire. All rights reserved. Reproduction or redistribution of this content without prior written consent from PR Newswire is strictly prohibited. Albany Business Review is not responsible for this content. Learn more about this service.

It has long been noted medical treatment and patient education varies depending on an individual’s race or ethnicity, and this health disparity is only becoming more evident. According to new research from Brown University, the gap is now clearly visible in when it comes to communication about HIV medication adherence.

In an investigation involving the doctor-patient dialogue about HIV drug adherence, data revealed there were several specific differences in doctor conversation based on a patient’s race or ethnicity. These disparities were classified based on speech patters called “utterances,” or patterns of dialogue related to asking questions, giving information, giving instructions, making requests, or expressing desires.

Researchers found these utterances were directly related to the discussions doctors had with patients regarding HIV medication adherence, and while physicians did well in some areas such as discussing adherence more with minorities compared to non-Hispanics whites, at the same time such discussions lacked other important qualities, like humor and open-ended questions.

Breaking barriers to medication adherence in HIV

Non-Hispanic black patients fared the worst when it came to participating in HIV medication adherence conversations; the data indicated Non-Hispanic black individuals, due to different speech patterns, were less likely to contribute to a conversation, and therefore HIV medication adherence discussions were dominated by the physician. Non-Hispanic black individuals were also less likely to discuss goals and values than other races and ethnicities.

For Hispanic patients, doctor discussions were lengthier than those for non-Hispanic whites; however, in those conversations there were fewer open-ended questions, a lack of humor, and a lack of problem-solving discussions. In fact, though the conversations were lengthy, Hispanics received the same amount of problem-solving discussion as did non-Hispanic whites. Instead, doctors focused on provider directives, direct statements like “Take your medicine or you’ll get sick.”

Part of the reason utterances are different for minorities, speculate researchers in the press release, is because so much emphasis is placed on physicians to spend adequate time with minority patients; it has nothing to do with the fact that minorities need more time. Experts argue that if the conversations were the same, minorities would likely need a similar amount of time compared to non-Hispanic whites, but cultural differences and language barriers can contribute to how an HIV medication conversation goes.

The possibility that seems most compelling to me is the doctors don’t trust their black and Hispanic patients as much to be adherent,” said lead author M. Barton Laws, assistant professor (research) of health services policy and practice in the Brown University School of Public Health.

“It has been epidemiologically observed that they do tend to be less adherent, but it’s not because they are black or Hispanic.”

The findings indicate underlying reasons why minority patients may be less adherent with drug protocols. Those groups who experienced physician discussions based on directive rather than problem-solving had a much lower rate of HIV medication adherence. While the research did not prove a cause and effect scenario, Law and his team indicate the next step will be to determine if changing communication patterns for minorities does or does not affect drug prescribing outcomes.

A switch to a cheaper injectable illicit drug led to a major outbreak of HIV infection in Tel Aviv, Israel, and should serve as a warning signal for other cities with apparently stable HIV epidemics among people who inject drugs, Israeli researchers warned last week at the 14th European AIDS Conference.

Professor Michel Kazatchkine, the UN Secretary General’s Special Envoy on HIV in eastern Europe and central Asia, also warned the conference of the potential for new epidemics of HIV in people who inject drugs, following recent HIV outbreaks in Romania and Greece driven by the availability of new substances.

HIV prevalence among people who inject drugs in Israel has been stable for the past decade, as a result of government-funded needle and syringe exchange programmes, and opioid substitution therapy. Crusaid Kobler AIDS Center, Tel Aviv Sourafsky Medical Center, had observed no cases of primary HIV infection in people who inject drugs among 130 cases of primary infection diagnosed by the clinic.

Yet in June 2012, Tel Aviv Medical Center Laboratory noticed a disturbing phenomenon. Five primary HIV infections had been diagnosed in people who inject drugs in two months, and over the following year a further 40 cases were identified. The majority of these cases were diagnosed following admission to hospital with severe bacterial infections – bacteraemia, pneumonia or endocarditis – and every person diagnosed with HIV was also found to have hepatitis C.

In every case the patient was a long-term heroin injector who had been using the needle and syringe exchange on a regular basis.

But in early 2012, a large number of heroin injectors began switching to a cheaper injectable substance, known as ‘hagitat’ in Israel, a cathinone derivative also known as ‘bath salts’, injected in combination with the opioid substitute buprenorphine. Cathinone derivatives include mephedrone, a popular ‘club drug’. Many synthetic cathinones are not controlled substances under drug enforcement legislation, and new variants are emerging all the time.

Everyone who became infected with HIV during the 2012-13 outbreak had switched to injecting ‘hagitat’.

In contrast, none of the stable drug users who continued to inject heroin became infected with HIV.

Cathinone derivatives are synthetic amphetamine-like stimulants that induce euphoria, increased sex drive and sociability, as well as delirium and violent, erratic behaviour. They can also cause cardiac arrhythmias, hyperthermia, rhabdomylosis or death, and are associated with a high frequency of severe bacterial infections if injected.

Cathinone derivatives were adopted rapidly by drug users in Tel Aviv because they are cheap in comparison to heroin, but the drug effect is short, requiring up to 30 injections each day. Whereas heroin injecting is a relatively private activity (needle sharing takes place with only one or two people in most cases), cathinone injecting tends to be highly social. Furthermore, whereas heroin injecting requires the drug to be heated in a cup or spoon before being drawn up into the syringe, cathinone derivatives must be dissolved in cold water to avoid inactivating the drug. The lack of heating is likely to remove any sterilising effect that heating might have during heroin injecting, said Dr Eugene Katchman of Tel Aviv Sourafsky Medical Center. A very high rate of syringe re-use and needle sharing occurs as a result of the high injecting frequency, Dr Katchman added.

Phylogenetic analysis of 30 outbreak isolates revealed that all drug users had been infected with HIV-1 subtype A/CRF01 AE, and suggested that all infections were linked to one originating isolate.

In an effort to limit the further spread of HIV, doctors from Tel Aviv Sourafsky Medical Center educated needle and syringe exchange programme staff and volunteers on the outbreak, and instituted an active screening programme among drug injectors who used the needle and syringe exchange.

Needle and syringe exchange staff launched an education programme among drug users, and also increased the supply of needles, syringes and sterile cups.

Everyone who tested positive for HIV was offered immediate antiretroviral treatment in order to reduce viral load and limit onward spread of HIV. Viral loads at diagnosis were high (a median of 181,000 copies/ml) and the median CD4 cell count was 560 cells/mm3.

A rapid, multidisciplinary response is required when shifts in drug use trigger a new outbreak of HIV among people who inject drugs, Dr Katchman told the conference.

A recently published study in the American Journal of Public Health shows that HIV-infected women transitioning from jail experience greater comorbidity and worse HIV treatment outcomes than their male counterparts.

I had the opportunity to learn more about this research during an interview with the lead author of the study, Jaimie P. Meyer, MD, Yale University School of Medicine, Section of Infectious Diseases, AIDS Program on Tuesday (Listen below).

Why is HIV so prevalent in people of both sexes in the prison system? Dr. Meyers says one sixth of all people living with HIV/AIDS transition through jail or prison annually. “Part of the reason for this is the same types of risk behaviors that go along with HIV are the same kind of risk behaviors that go along with incarceration”, she notes. These include injection drug use, commercial sex work and factors like severe mental illness.

We then went into discussing the specifics of the study. Dr. Meyer said they did a multisite study looking at the individuals “engagement of care”. This includes do they have an HIV provider, taking antiretroviral treatment and adhering to it to get their viral loads low.

“What we found that prior to coming to jail, women did worse than men on every marker. And six months after leaving jail, women were a lot less likely than men to have an HIV provider, to be taking meds, to be adhering to their meds and having success with treating their HIV”, according to Meyer. “Women are about half as likely as men to have success in treating their HIV six months after being released from jail”.

This of course led to the obvious question, why?

Meyer listed some factors that are contributing to this–women are more likely to be homeless, ongoing cocaine use, and ongoing depression.

This unfortunately leads to greater risk of HIV associated disease, non HIV associated diseases but also to transmitting HIV to others.

So what can be done to reverse these results?

“What this study suggests is that we need specific approaches geared to women with HIV who are leaving prison or jail and transitioning into the community , intervention and programs directed to their specific needs.”

Dr. Meyer closes with, “It’s a population that deserves special attention.”

Robert Herriman – Writer, Co-Founder and Executive Editor of The Global Dispatch. Robert has been covering news in the areas of health, world news and politics for a variety of online news sources. He regularly writes about infectious disease news for Examiner.com and administers the Outbreak News section of The Global Dispatch.

Spring forward with fashion, furniture, and artwork finds at the Housing Works bi-annual Best of Spring sales event! We have re-stocked our shops with top-quality seasonal merchandise for a fraction of the retail price. This year THIRTEEN is your lucky number with sales in bloom at all of our shops and online at shophousingworks.org!

BONUS! All shoppers who share their best thrifted finds with us on Instagram could win one of 5 $100 Housing Works gift cards. To enter:

1. Follow @housingworks on instagram
2. Upload a photograph or a video showing us your best thrifted find
3. Include the hashtag #thriftandshout

COST OF ENTRY: Entry to each sale is FREE; however, Housing Works Supporter level members get one hour early access. Advocate level and above get in 30 minutes early. Join today, or become a member at a Housing Works Thrift Shop location the same day of a Best of sale and still get in free!

It’s the time of year again when elected leaders in Washington decide on funding for federal programs. Time and time again, it falls to us to remind them that the decisions they make on funding for global AIDS programs are more than just line-items on a spreadsheet. These decisions decide the fate of millions of people.

The research presented in this article is going to be crucial in convincing the U.S. government to increase funding levels for PEPFAR in order to save lives and continue on a trajectory to end AIDS. Please consider making a donation to Health GAP today to support in-depth policy analysis like this.

The article has been published at the same time as the White House and the State Department are drafting the President’s Budget Request for FY 2015. They are considering whether to flat-fund PEPFAR for a third year in a row. As shown in Matt’s article above, flat-funding PEPFAR in FY’15 will have drastic effects on the scale-up of HIV treatment in the coming year. We need your help to stop these budget cuts!

*Here are three quick and easy actions to take IMMEDIATELY: *

1. Register for the Student Global AIDS Campaign Thunderclap before 12 NOON on Thursday. We need 100 people to sign up via your twitter, Facebook or Tumblr accounts, so that our message to Secretary Kerry and the White House will be blasted into the social media world at one time to catch the attention of our targets.

A Detroit woman is suing the city of Dearborn over how a police officer treated her during a 2012 traffic stop once he learned she was HIV-positive.

Shalandra Jones alleges her constitutional right to privacy and rights under the Americans with Disabilities Act were violated when, “demonstrating his own prejudices,” the officer revealed her condition to others, “berated and humiliated” her for not saying she has HIV before a search and then “unreasonably and discriminatorily detained and charged” her “solely on the basis of her HIV positive status,” according to the lawsuit filed Monday in U.S. District Court.

The suit, which also names the officer, seeks unspecified damages as well as a permanent injunction requiring Dearborn to develop and adopt policies for hiring, supervising and training its police officers.

The aim is to prevent officers from discriminating against others who have HIV or AIDS, said attorney Joshua Moore, president of Detroit Legal Services, which is representing Jones. “We really want the problem fixed,” he said. “It cannot be happening.”

Jones’ vehicle, driven by a companion, was stopped Aug. 3, 2012, reportedly for a broken tail light and she ultimately was ticketed for marijuana possession. The police officer said he spelled marijuana; Jones, an authorized medical marijuana patient, told him she had the drug, according to the suit. The officer began searching the vehicle and Jones’ belongings when he found the driver did not have a license, the document said.

When Jones told him pills in her purse were for her illness, the officer responded: “You just made me mad!”

Police dashboard video from the stop was obtained by the American Independent, a national news network, and posted on YouTube.

In the video clip, the officer repeatedly mentioned his fear of being exposed to HIV, at one point saying: “I don’t want to catch something … I don’t want that (expletive). I got a family.”

The lawsuit also quotes the officer as saying: “Dearborn does not have that many people living with HIV, and the police do not like people with HIV.”

According to the Centers for Disease Control and Prevention, HIV is not transmitted through casual contact.

On the video, the officer is recorded telling Jones she was ticketed because he was “aggravated” she hadn’t disclosed her HIV-positive status before the search.

The officer’s statements were “cruel, discriminatory as to her disability, and did cause emotional harm and embarrassment,” according to the lawsuit.

In September, Dearborn dismissed a misdemeanor marijuana charge against Jones, her attorneys said.

Soon after the incident gained national attention in 2012, Haddad told The Detroit News the department would undergo training to improve interactions with people with HIV or AIDS.

Moore said he met with Haddad and referred him to a local group willing to coordinate the training. But as of this month, no plans had been pursued, he said, and it was unclear if any ever were.

“We realized they were not serious about correcting any situation,” Moore said.

Recently, news broke that an HIV-positive 22-year-old former college student in Missouri was accused of exposing others to HIV and allegedly taping his sexual encounters without their knowledge.

The police found more than 30 tapes in Michael Johnson’s home of partners he met mostly online and at his school, Lindenwood University, CBS.com reported. Since his October arrest, five people have come forward claiming they had unprotected sex with Johnson and were unaware of his status. One man claims that he tested positive and Johnson was the source of his infection.

It’s unknown how many people he had sex with asked him if he was HIV-positive, but according to Buzzfeed, two of his partners did, and Johnson said he was not. If found guilty, Johnson could be sentenced to life in prison.

Now, I have always believed that anyone with an STDhas a moral and ethical obligation to disclose his or her status to his or her partner(s). I do not condone what Johnson is being accused of, but should the act of not disclosing be a crime?

No.

But in many states it is. And what’s worrisome is that these laws don’t really protect HIV-negative folks. Instead they continue to stigmatize the HIV community, deter people from getting tested and unfairly prosecute innocent people living with HIV/AIDS. Remember, cases like Johnson’s may get the most media coverage, but they are the exception, not the rule. There are people being thrown in jail for biting or spitting at someone, when saliva isn’t how HIV is transmitted. Or being arrested because a scorned ex is trying to seek revenge by claiming they were unaware of their HIV status.

Not to mention, how if at all do these laws address the reality that for some living with HIV/AIDS, disclosing their status could mean they are attacked and even murdered?

But what’s really worrisome are the messages these laws send to HIV-negative folks like myself. They tell us that we are not responsible for our own health, which couldn’t be further from the truth.

If you want to remain HIV-negative, you have to make a conscious effort to do so.

Yes, some can control their situation better than others. For those in violent relationships, demanding condoms is not going to happen given that comes with dire consequences. Or I think about folks in marriages or long-term relationships who test positive not even thinking they were at risk because their relationship wasn’t as monogamous as they thought. Or people who have to use sex as a means to survive.

But let’s be clear, that was not the case with Johnson’s “victims.”

These people willingly had unprotected sex with Johnson. And this isn’t a judgment about having casual sex, because knowing someone doesn’t protect you from HIV/AIDS either. Only condoms do. And given the higher rates of HIV in the Black community, we really cannot afford to slip up given that we are more likely to encounter HIV when dating within our community.

Real talk: This isn’t new information.

And it’s frustrating because we are a generation of not knowing a world without AIDS and yet our cluelessness and the lack of responsibility blows my mind. Basic HIV 101: You cannot tell if someone has HIV, attractive people can have HIV and tops can be positive, too. And while talking about our statuses is important when entering sexual relationships, that doesn’t mean you take someone’s word as fact. People are not always truthful and in many cases people are not even aware that they are positive.

In the end, if anything tangible can be taken away from Johnson’s HIV exposure case, it is that you have be the one in charge of your health if you plan on remaining HIV-negative. The “burden” is on you, as it should be given that it’s your life and not anyone else’s.

The opinions expressed here do not necessarily reflect those of BET Networks.

BET Health News – We go beyond the music and entertainment world to bring you important medical information and health-related tips of special relevance to Blacks in the U.S. and around the world. Click here to subscribe to our newsletter.

For almost 10 years, I have traveled with a group of graduate students to London, England each January. During the two weeks we spend together, we enact a course of study that examines the HIV epidemic, particularly the medical, behavioral, and social issues that have shaped our battle against HIV/AIDS for the last 30 years, and examine the responses to the epidemic in the United States as compared to the United Kingdom. The UK provides an excellent contrast to the US with its provision of healthcare under the National Health Service, a single-payer system which is entirely funded through central taxation. Despite the radically different approaches to healthcare funding, there are many similarities with regard to the course of the AIDS epidemic in the two countries, including but not limited to the perpetuation of the epidemic in gay and black populations.

Every year, one theme seems to most dominate the course of our studies. This year, much of our discussion and study focused on the emergence and implementation of biomedical technologies to combat the spread of AIDS, namely treatment as prevention and Pre Exposure Prophylaxis (PrEP). It is the former that provided the most lively and heated discussions for the group and for me provided another perspective on the problems associated with this particular approach.

The concept of treatment as prevention is a logical one. Effectively treat those living with HIV, thus reducing viremia and in turn rendering HIV-positive individuals as less infectious. The Swiss Statement clearly supports this idea, and numerous studies including HPTN052, have demonstrated the effectiveness of this HIV prevention approach. As a result, nowadays, HIV-positive individuals in the US are encouraged to begin and antiviral regimen upon diagnosis. Seems simple enough.

Yet there is a flaw in this strategy that has sat uncomfortably with me for the last few years. Data from across our country indicate that on average only 28% of Americans living with HIV effectively suppress their viral load. The treatment cascade posits that for every 100 American living with HIV, 80 are aware of living with HIV, 62 are linked to care, 41 are retained in care, and only 28 achieve viral suppression due to treatment. How then is it possible that treatment as prevention will actually work? There is an inherent flaw in the thinking around HIV prevention in light of this reality.

Our colleagues in UK are also skeptical about treatment as prevention watching us closely as we roll out this system. In fact, the British HIV Association does not recommend treatment upon HIV diagnosis; their guidelines prescribe that antiviral treatment (ART) not be initiated until markers such as CD4 count reach 350. More recently this figure has been reconsidered and ART is often initiated when CD4 counts reach 500. Our colleagues from across the pond and across professions—physicians, nurses, psychologists, advocates, and leaders of community agencies— all support this approach to care, arguing that there is no definitive evidence that initiating ART earlier is ultimately more beneficial than waiting. In fact, they believe that there is no no need to add undue burden on the HIV-positive individual, and ultimately there is no information about what a lifetime of administering antivirals will have on the health of HIV-positive individuals. While I respect this opinion, I am of the mind that one should suppress viral replication immediately and preserve those mature CD4 cells before they are destroyed. Also, one could argue that the Brits, under the NHS, are reluctant to begin antiviral therapy immediately upon diagnoses because of the cost implications. The latter, of course, is a hypothesis.

Still one argument that resounded loudly and clearly with me was raised by my colleague, HIV-positive activist, Silvia Petretti, the Deputy CEO of one of the UK’s most well established service organizations, Positively UK. Silvia powerfully and emotionally suggested that treatment as prevention is just another approach, which places the responsibility of the HIV epidemic on the shoulders of HIV-positive people. This can be viewed as another in the long line of HIV prevention strategies that places the burden on the HIV-positive, just like expectations that infected individuals always disclose, use a condom every time, and ultimately protect the well being of the HIV-negative. The long terms survivors whom I interviewed for my new book, The AIDS Generation: Stories of Survival and Resilience, raised similar concerns about the lack of shared responsibility.

I had never thought of treatment as prevention in this manner and never considered that this approach was just another that placed the responsibility of the epidemic on me and my fellow HIV-positive men and women. I wonder then how many of us are being bullied by the medical establishment and our health policy leaders to initiate treatment simply to curtail the spread of HIV without any regard to how these treatments affect us both in the short and long term, physically, emotionally, and socially. And I will think twice moving forward when I counsel those newly infected who seek my advice.

I would like to think that those advocating treatment as prevention ultimately have the health of HIV-positive individuals in mind first and foremost. But my immersion into the UK system this last month has led me to wonder about the motivation that underlies this approach. It is my hope that decisions about my health, and the health of all HIV-positive individuals, are not being made with the perspective that we are vessels of transmission that need to be contained. Coupled with the dismal statistics from the treatment cascade, one is left to wonder if treatment as prevention is serving anyone effectively. Perhaps it is time to refocus and replace our energies in treatment as care, helping HIV-positive individuals maintain their overall well being in every aspect of their lives, and ultimately sharing the responsibility for the containment of this epidemic with those who are HIV-negative.

Some advocates hope that Andrew Cuomo, who has supported Medicaid reform, gay marriage and gun control laws, will be willing to stake political capital on the effort to end new HIV infections.

Advocates will be listening closely to the governor’s budget address to see if the administration responds to their push for a comprehensive effort to effectively end new infections.

Last Spring, some New York politicians and advocacy groups began pushing what they call “an initiative to end AIDS,” or end new HIV infections, in the state. They are hopeful that Governor Cuomo and Mayor Bill de Blasio will take up the cause.

According to the New York State Department of Health, new diagnoses for HIV fell 37 percent, with diagnoses falling in all risk groups from 2002 to 2010. From 2003 to 2010, there was a 96 percent increase in the annual number of newly reported HIV infections in young men who have sex with men of color, the same report reads.

HIV is still an epidemic in neighborhoods in parts of the Bronx, including Tremont and parts of Claremont, Belmont and Crotona. And, says Daniel Tietz, executive director of AIDS Community Research Initiative of America [ACRIA,], which provides HIV/AIDS education and consulting and studies the needs of at-risk populations, “When only about 40 percent of New Yorkers with HIV are virally suppressed, meaning they are consistently engaged in care and on effective treatment, it is clear we’ve not solved this or ended the epidemic.”

The initiative is a combination of policies, some health-related and some focused on quality of life in general, such as better housing and primary care. It’s what Housing Works CEO Charles King calls a “thatch roof” of a plan because all of the parts are needed in order to strengthen its efficacy.

Multifaceted plan

Housing Works, Treatment Action Group and ACRIA organized engagement with state senators, assembly members, state and city agencies and the governor’s office to gain funding for the AIDS Institute, which recently avoided $40 million in cuts, not to mention talk of closure.

An essential part of the plan is making sure young people of color get access to fourth-generation testing, which simultaneously detects both antigen and antibodies for HIV s and can alert newly infected people much faster.

“There is a big spike in virus in the blood soon after infection, but often before an HIV antibody test would pick-up an infection. This is when folks may pose the greatest risk to others, usually unknowingly,” Tietz says. “The typical mouth swab or home test kit is not testing for the virus itself, but rather the body’s antibody response, which may take six to eight weeks after infection to develop. If someone had unprotected sex a few days ago and decided to take an HIV, the current antibody testing couldn’t tell you whether you were infected.”

A “30 percent rent cap,” or a making sure that New York City residents with HIV/AIDS living in subsidized housing have their rent capped at 30 percent of their income, is also important to the initiative, and one Housing Works has long fought for. The 30 percent rent cap bill passed both houses but stopped at Governor David Paterson’s veto in 2010.

The plan would also improve access to nPEP (non-occupational Post-exposure Prophylaxis) and PrEP (Pre-exposure Prophylaxis). The former medication would prevent HIV inflection after exposure to the virus and the latter pills would reduce their risk of becoming infected. King says he would like to do fewer testing sessions in clubs and instead focus on getting men who have sex with men primary care where they can be regularly screened for HIV, which he says will enable physicians to catch infections earlier.

“A testing session in a club can’t provide someone with a script for PrEP, and few actually have the time or inclination to discuss PrEP or PEP with people who are negative,” he saus. “We are going to catch far more people early in their infection and they will already be linked to care.”

Tietz says that the 30 percent rent cap would be key to the initiative as it would prevent homelessness for thousands of low-income New Yorkers who are permanently disabled by HIV/AIDS and would permit 1,000 of them to move out of the shelter system.

“These folks could then focus on their HIV treatment and not live in constant worry and fear of losing everything. People face lots of other barriers and challenges that we need to address, such as continuing stigma and discrimination, and mental health and substance use issues,” Tietz says.

Several agencies involved

A lot of coordination is required across state and city health agencies to make the plan effective.

The initiative would require significant involvement from New York City health officials, and Tietz says that Mayor Bill de Blasio’s appointment of Lilliam Barrios-Paoli as deputy mayor of health and human services is an encouraging signal.

The mayor has also expressed support for the 30 percent rent cap, which he supported in the past as a public advocate and throughout his mayoral campaign. Although de Blasio’s platform did not outright acknowledge AIDS prevention, his interests and political affiliations suggest he is much more willing to work with stakeholders on the issue than Mayor Michael Bloomberg, who was often at odds with the HIV advocacy community.

Speaker of the Assembly Sheldon Silver and Senate Majority Leader Dean Skelos did not return requests for comment on the initiative.

New York State Senator Brad Hoylman, a Democrat who represents District 27 in Manhattan, is supporting the initiative and says that although he is not blindly optimistic, he has seen strong signals in discussions with the governor’s team that they are interested in pushing the initiative forward. Hoylman argues that although the plan can be argued on the merits of its cost efficiency, his primary argument is a moral one.

“The issue is a tremendous one for low-income people, for the most vulnerable people in our society. One reason for the misunderstanding is that people think the crisis is over,” Hoylman said in a phone interview.

Benefits and costs

Each infection averted could save the state as much as $379,668 per person (in 2010 dollars) in lifetime medical costs according to the Center for Disease Control.

As for the initiative’s costs, PreExposure Prophylaxis (PrEP) treatment, or Truvada, the only FDA-approved drug, costs between $600 and $1,000 per month, according to John Emery, spokesman for the New York State Department of Health. It consists of two medications taken daily as long as the risk of HIV is high. It could cost up to $14,000 a year.

For non-Occupational Post Exposure Prophylaxis (nPEP), the treatment, a combination of three medications, lasts 28 days. Its costs range from $600 to $1200, Emery says. Both treatments are covered under Medicaid.

King says this is the right time for an initiative to end AIDs, for a variety of reasons. The city has gained a new mayor, the Affordable Care Act came to fruition and the Medicaid Global Spending Cap Fund freed up additional money. Since April 2011, enrollment in the Medicaid program increased by over 390,000 but remained $2 million under the $15.9 billion target, according to the state’s March 2013 Global Spending Cap report.

“We found that sweet spot, where the political stars were aligned and science was saying what we’d known for a while,” King says.

Will Cuomo act?

One of the key parts of the puzzle is having a governor willing to support ideas that aren’t always popular or easy and King says Andrew Cuomo, who has supported Medicaid reform, gay marriage and gun control laws, fits the bill.

“Cuomo has proven his willingness to champion bold ideas that aren’t always popular politically,” King says. “He did that with Medicaid reform in an inclusive and participatory way. He cut the right deals that predecessors had not.”

Advocates were disappointed that the governor did not mention the possibility of a task force in his annual State of the State address, but hope that he will mention it in his budget speech on January 21.

King says he doubts it will be mentioned, despite a “good faith effort on the part of the governor’s staff.”

“There is probably not enough time to get a deal with [anti-HIV drugmakers] that would make everyone comfortable with the costs. I also believe we will see a fairly strong effort by the Department of Health to advance the initiative even if the Governor doesn’t act at all,” King says.

Tietz is more hopeful on the matter, and echoes the sentiment that New York State Health Commissioner Nirav Shah’s support is key to advancing a task force on ending AIDS.

“I think the near-term issues are entirely about the timeline, including the pace of ongoing price negotiations with key anti-HIV drugs makers, and whether such discussions will be far enough along to permit an announcement at next week’s release by the Governor of his 2014-15 executive budget,” Tietz said in statement.

In the meantime, advocates like Tietz are doing their best to carve out funding before late March when the budget is finalized. Tietz said he will raise the issue again on February 3 at joint legislative budget hearings on the Health/Medicaid budget, but he said he believes the governor’s key staff understands the urgency of making a decision.

Tietz wrote the governor a letter on January 14, requesting that he mention the initiative in his budget speech and give the initiative the public push it needs, which read, “If the task force is promptly named and convened by you it could complete its recommendations on a plan to end the epidemic, the outline for which has already been developed by the AIDS Institute, for inclusion in the 30-day budget amendments.”

A contentious anti-trust trial over pricing for HIV medications will have to start all over again, after the Ninth Circuit Court of Appeals ruled that the defendant, Abbott Laboratories, couldn’t reject a juror based on his sexual orientation.
Plaintiff GlaxoSmithKline PLC had already clinched a $3.5 million verdict and prevailed on several claims that Abbott violated antitrust laws by jacking up the price of its HIV cocktail drug — right after it licensed the medication to GSK. But the case really hinged on a brazen move that Abbott’s lawyers made during jury selection, nixing a juror who self-identified as gay.

Joseph Saveri, a lawyer for one of the plaintiffs suing alongside GSK, balked at the ouster.

“The problem here, of course, Your Honor, is the litigation involves AIDS medication,” Saveri told the court. “Incidents of AIDS in the homosexual community [are] well known, particularly [among] gay men. So…it looks like Abbott wants to exclude from the pool anyone who is gay.”

In their appeal to the Ninth Circuit, lawyers for GSK argued that, in light of the Supreme Court’s June decision to strike down the Defense of Marriage Act, “Juror B” — as he’s dubbed in court documents — should belong to a protected class.

Abbott’s peremptory strike against the juror is not only discriminatory, but unfounded, GSK’s counsel continued. During the selection process, defense attorneys asked five questions about his knowledge of HIV drugs, but didn’t broach the issue of whether he’d be a biased juror by virtue of having a male partner.

The appeals court sided with GSK, ultimately turning a business lawsuit into a civil rights case. The trial, which lasted four weeks and put millions of dollars at stake, will have to start anew.

Eighteen months after the approval of Truvada (tenofovir/FTC) by the U.S. Food and Drug Administration as a pre-exposure prophylaxis (PrEP) regimen to prevent HIV transmission, the New York state AIDS Institute has released guidelines for health care professionals as to how to approach prescribing PrEP to people who wish to use the drug. Truvada is currently a part of many medication regimens for HIV-positive people, and is among the drugs used as post-exposure prophylaxis (PEP) for those who have had a potential exposure to HIV.

The guidance states that it was released after “studies evaluating the efficacy of PrEP have shown promising results.” With the U.S. Centers for Disease Control and Prevention issuing only interim guidance on PrEP for specific populations, New York’s guidelines are a welcome sign that adoption of PrEP may finally ramp up across the U.S.

The guidance includes methodology behind PrEP, what medicines are candidates for PrEP (currently only Gilead-produced Truvada), contraindications and considerations, notes on how to do assessments, education, laboratory tests, parameters for follow-up and monitoring and the proper course for discontinuation of a PrEP regimen.

Several key principles in the PrEP guidance include: PrEP as part of a full comprehensive prevention plan; PrEP as a tool for people in serodiscordant relationships; the importance of adherence; and advice on those who use PrEP and choose not to use condoms. On the topic of condom use, the guidance says, “Although consistent condom use is a critical part of a prevention plan, lack of use of barrier protection is not a contraindication to PrEP.” Concern about sexual risk and PrEP is a common theme in many discussions around the regimen.

Andy Velez, member of the AIDS Coalition to Unleash Power (ACT UP), which has been calling for the release of these guidelines for some time, said, “It’s good that the New York State guidelines have finally been released. But finally is not good enough. This kind of bureaucratic delay has meant that many who could have been prevented from being HIV infected have ended up seroconverting. We are living through the worst new infection numbers among men who have sex with men since the early years of HIV/AIDS. Business as usual on the part of bureaucrats, pharma and service providers is not acceptable. Urgency is the word.” ACT UP has begun extensive work around PrEP advocacy as it turns its focus toward HIV prevention as a cornerstone of its agenda.

Yekaterinburg, the Siberian city where drug users used to be handcuffed to their beds to help them quit, exemplifies Russia’s efforts to stamp out the habit in a nation that has the most HIV-infected addicts.

The practice was stopped by local police in 2005, though going cold turkey still prevails, said Kiril Petrov, a coordinator with City Without Drugs, the organization whose centers used handcuffing but have abandoned that method. Users are expected to quit without the aid of addiction-easing medicines such as methadone, which is banned in Russia.

While its neighbors China and Ukraine are seeing the benefits of methadone and other ways of preventing HIV transmission such as clean needles, Russia is instead fighting drugs and the virus with a patchwork of home-grown strategies that emphasize willpower, personal discipline and healthy lifestyles. The approach reflects a culture that idolizes strong men such as President Vladimir Putin and is common in Russia, with hundreds of similar centers around the country, said Sasha Lesnevskiy, a psychologist at an HIV clinic in Yekaterinburg.

“It’s a kind of military idealism,” Lesnevskiy said. “I don’t understand as a psychologist why a person who comes out of one of these rehabilitation centers would quit drugs.”

There’s been a 10-fold drop in drug-related deaths since City Without Drugs started, Yevgeny Roizman, the group’s founder, said in a telephone interview.

Cheap Heroin

Still, the cold-turkey push isn’t stemming HIV: as of Dec. 25, the Sverdlovsk region, of which Yekaterinburg, with 1.4 million people, is the capital, had 1,494 cases of HIV per 100,000 people, the third-highest rate in Russia and twice the national average, according to the region’s state-run Center for Prevention of AIDS and Infectious Diseases. Almost 66,000 people have been infected with HIV in Sverdlovsk, making it the region with the most cumulative infections.

The City Without Drugs concept remains popular in Yekaterinburg. In September, Roizman was elected mayor of Russia’s fourth-biggest city in a surprise victory over a candidate from Putin’s United Russia Party.

City Without Drugs was started during the 1990s, when cheap, high-quality heroin flooded into Yekaterinburg from Afghanistan following the collapse of the Soviet Union.

“It was cheaper than vodka,” Petrov said. “It was even sold to school children.”

Handcuffs Helped

Petrov said he’s living proof the approach works. The enforced cold-turkey method — Petrov was handcuffed — helped him break his heroin habit and realize he didn’t need drugs.

“We have to put a drug user in such a condition where he has no access to drugs, and he himself can see that he can live and survive without drugs,” he said. “In the future, he himself has to decide whether he needs drugs or not. There is no other solution.”

About 5,000 people have been through the group’s centers, Petrov said, though the organization doesn’t keep figures on how many have remained drug-free.

No one is forced to stay, though drug users who try to leave will be urged to complete the process, Petrov said. A qualified psychologist helps the addicts, he said. Patients are asked to pay 8,000 rubles ($240) a month to cover the cost of food. Those who can’t pay are still accepted, he said.

Quarantine Room

At one of the group’s centers on the city’s outskirts, a locked iron gate, a security guard and a dog help ensure no one gets in or out unnoticed. The slogan “Strength in Truth” is stenciled in blue and red letters above the door of a run-down house. Addicts in the initial stages of recovery spend three weeks in a so-called quarantine room jammed with bunk beds and are under constant video surveillance.

Osman Osmanov, 40, said he checked in to break a three-year habit of injecting heroin as many as 10 times a day.

“When I saw the room with the bars on the windows it gave me adrenaline to overcome this,” Osmanov said. “This center is the only thing that helped me get out of the swamp. I was at other centers but they were hopeless.”

While the program may help a few patients, Lesnevskiy said he refers drug users to centers operated by churches, Narcotics Anonymous, or a newly-opened state-run center.

Pavel Shalginsky, a 32-year-old drug user, said he declined an opportunity to attend a City Without Drugs center.

“I said I’d rather go to prison,” Shalginsky said.

Infections Rise

Roizman rejects such criticisms.

“I’m not interested in these talks,” he said. “I gave my blood and my soul. I invested my money and 15 years of my life in this.”

Meanwhile, new HIV infections in Russia jumped 13 percent to 70,453 in 2012. Vadim Pokrovsky, director of the country’s Federal AIDS Center in Moscow, said he “can’t find a sane explanation” for why his superiors in the Kremlin continue to prohibit methadone.

“The people who are prevailing now are the supporters of force used in order to combat drug use,” Pokrovsky said. “The question of how to stop the epidemic of HIV among drug users is still not solved.”

One afternoon last spring I met a farmer named Salomão in a rural community in Southern Mozambique. Salomão was in his late 30s, living with both HIV and tuberculosis, and very poor, with few possessions aside from the clothing on his back, some cooking pots, and his hoe. In late March, he walked without shoes for eight hours in the pouring rain so that he could pick up his month’s supply of drugs. When he got to the health center, he was tired and weak. He was then humiliated and turned away because his health card was wet. And in the process, Salomão’s HIV status – something that should be held in complete confidentiality – was disclosed to everyone who happened to be in the crowded waiting area at the outpatient clinic. Upon returning to his village, Salomão was shunned by his family and many of his neighbors. Without his medicine, his health deteriorated rapidly. By May, he had developed several abscesses on his leg. He resisted returning to the health facility. Within a few weeks Salomão died at home, alone, and in silence.

This story repeats itself in towns and villages across the globe. A mother takes her three year-old daughter to the hospital, where she is diagnosed with malaria. The girl dies several days later because the medicine she needs is out of stock. A son carries his ailing father 12 kilometers to the nearest health center, only to find that it is closed. A young woman dies in labor because she does not pay a bribe. Entire communities accept lack of access to basic but life-saving services as an inexorable reality. Countless people suffer from conditions that are preventable and treatable.

The culture of silence runs deep and is often grounded in the belief that any provision of health care is a gift bestowed upon the patient and his or her family. It stems from both the absence of functional systems of grievance redress and the very real fear of retribution when patients do voice complaints, as well as from power inequalities around gender, class, and educational level, among others.

While at the turn of the millennium, access to affordable HIV treatment in low and middle-income countries was virtually nonexistent, at the end of 2012 there were 9.7 million people receiving lifesaving therapy. Thanks to this rapid scale-up, as well as to groundbreaking scientific evidence that early treatment can reduce transmission of disease, we are now at a critical juncture; for the first time, the end of the AIDS epidemic is conceivable.

While we have made tremendous strides, the challenges that remain are vast. Most people living with or at risk of HIV still do not have access to prevention, care and treatment. The epidemic continues to ravage families, communities and entire nations. This is particularly true in sub-Saharan Africa, which bears the burden of disease in disproportionate measure, and where HIV/AIDS is the leading cause of death in adults.

We must acknowledge that medicines and technology alone are not enough. The solution will never be a purely biomedical one. Our strategy, if it is to be successful, must recognize that achieving universal access to care and treatment necessarily means addressing human rights barriers to health services. This will require confronting not only the challenges of physical distance and availability of diagnostics and drugs, but also of stigma, discrimination and quality of care.

So how do we take health and human rights ideology from the theoretical to the tangible in order to have real impact on the lives of marginalized populations?

Accountability of public health services to individuals and communities will be essential in achieving and sustaining gains in access to and quality of health services.

We need to focus on increasing civic engagement by developing capacity directly among the poor to pursue their entitlements and engage in governance of the health sector. For this to happen, laws and health policies must be accessible to everyone, both physically and linguistically. This requires translation into local languages and use of both written and spoken means of communication that are more inclusive of those with limited or no literacy.

Civil society has a central role to play in efforts to achieve justice in the health sector. Yet participation of civil society is too often nominal and is undermined by the narrow political space in which these groups operate and by their limited financial and technical capacities.

When people do have the courage to complain, they need somewhere to go. We must work with governments to establish mechanisms for transparency and grievance redress that are both inclusive and responsive.

And we need to build a culture of solidarity between patients and providers and to better support health workers, many of whom themselves are struggling to survive and are victims of unjust systems in which they do not have the tools and information they need to perform their duties.

As we push forward in the struggle to achieve the universal right to health care, we must call on governments, donors, and the NGO community to place real investment in the legal empowerment of the poor and to recognize this piece not as an add-on, but instead as vital as the medicine itself.

Ellie Feinglass is Namati’s Health Advisor and Co-Director of the Right to Health Program in Mozambique.

Scientists seeking a cure for AIDS say they have been inspired, not crushed, by a major setback in which two HIV-positive patients believed to have been cured found the virus re-invading their bodies.

True, the news hit hard last month that the so-called “Boston patients” — two men who received bone marrow transplants that appeared to rid them completely of the AIDS-causing virus — had relapsed and gone back onto antiretroviral treatment.

But experts say the disappointment could lay the basis for important leaps forward in the search for a cure.

“It’s a setback for the patients, of course, but .?.?. the field has now gained a lot more knowledge,” said Steven Deeks, a professor and HIV expert at the University of California at San Francisco.

He and other experts say the primary practical message is that current tests designed to detect even very low levels of HIV in the body are simply not sensitive enough.

As well as having the human immunodeficiency virus (HIV), the Boston patients both also had a type of blood cancer called lymphoma, for which they had bone marrow transplants — one man in 2008 and the other in 2010.

They continued taking antiretroviral AIDS drugs, but eight months after each patient’s transplant, doctors could not detect any sign of HIV in their blood.

In the early part of 2013, both patients decided to stop taking their AIDS drugs and both appeared to remain HIV-free, prompting their doctors at Boston’s Brigham and Women’s Hospital to announce that they may have been cured.

Yet in December came news that one of the men had begun to show signs of an HIV rebound by August, while the second patient had a relapse in November.

One of the doctors, Timothy Henrich, said the virus’s comeback underlined how ingenious HIV can be in finding hiding places in the body to evade attack efforts by the immune system and by drug treatment.

He said both patients were “currently in good health” and back on antiretroviral therapy.

Barely a decade ago, few HIV scientists would have dared put the words “HIV” and “cure” in the same sentence. Yet some recent cases are intriguing.

First was the now famous case of Timothy Ray Brown, the so-called “Berlin patient,” whose HIV was eradicated during treatment for leukemia in 2007 after he received a stem cell transplant from a donor with a rare genetic mutation that resists HIV infection.

Such an expensive and life-threatening procedure could never be used as a broad-spectrum approach for the world’s 34 million HIV patients. But the results focused scientific attention on a genetic mutation known as CCR5 delta 32 as a target for possible gene therapy treatment.

Last March, French scientists reported on 14 HIV-positive people who had been treated very swiftly with HIV drugs but then taken off them. The researchers said that seven years later, the patients were showing no signs of a virus rebound.

Just weeks before that, doctors reported that an HIV-positive baby in Mississippi given antiretroviral treatment for 18 months from the day she was born seemed to have achieved a “functional cure.”

This suite of tools, developed by HPP, the University of Washington, USAID, and the U.S. Centers for Disease Control and Prevention, was designed to strengthen the capacity of key stakeholders to engage in and monitor health policy development and advocacy interventions.

The Road Map consists of eight different tools that can be used separately or together to help stakeholders systematically review the policy process and take steps toward full implementation. Each tool is meant for a different stage of the policy process and helps users fully view the different actions necessary to move the policy process forward from development to implementation and evaluation.

Kaiser Releases Fifty State Reports On the Impact of the ACA on Coverage In Every State

New reports for each of the fifty states from the Kaiser Family Foundation show how the Affordable Care Act (ACA) changes insurance coverage in each state. The state-level reports serve as a guide to the potential impact of the ACA in each state and the District of Columbia as legislatures begin to convene and governors prepare their budget proposals and state-of-the-state addresses.

Based on analysis by Kaiser researchers, each state report provides a breakdown of how many uninsured people are eligible for Medicaid or for financial assistance to help them buy private insurance in the new Marketplace, and how many may gain new coverage but will not receive any financial assistance. Each report also details the income levels at which people in each state are eligible for Medicaid or financial assistance in the Marketplace. For states not expanding Medicaid, each report quantifies how many uninsured people with incomes below the poverty level fall into the “coverage gap” and will be ineligible for financial assistance in the Marketplace or for Medicaid in their state. In larger states the reports also estimate how many uninsured residents are undocumented immigrants and therefore are ineligible for any coverage under the ACA. The reports can be viewed online as well as printed out and taken with you.

The state reports complement an online infographic released last month featuring an interactive map that allows users to click on each state to obtain key data about how the uninsured are expected to fare under the ACA in that state, and to compare the law’s impact in different states.

New Analysis Estimates the Number of People with HIV Who Could Gain New Coverage Under the ACA

A new analysis by the Kaiser Family Foundation in conjunction with researchers at the Centers for Disease Control and Prevention (CDC) provides the first national estimates of the expected impact of the Affordable Care Act’s coverage expansions on people with HIV.

The brief finds that close to 70,000 uninsured people with HIV who are in care could gain new coverage. This group includes almost 47,000 who could gain coverage through Medicaid if all states were to expand under the law and almost 23,000 who could gain coverage through the health insurance marketplaces, most of whom would get financial assistance.

Currently, 25 states are not planning to expand their Medicaid programs under the law, reducing the number of people with HIV who could gain Medicaid coverage. The analysis estimates that state decisions not to expand Medicaid would reduce the number eligible for Medicaid by more than 15,000, leaving them without affordable insurance.

For individuals left out of coverage expansions, the Ryan White HIV/AIDS Program will continue to be a critical source of support. The program will also likely continue to remain critical in helping wrap around insurance coverage for many insured people with HIV, as it does today.

The full analysis is available online. The Foundation has also updated The Uninsured: An Interactive Tool to highlight people with HIV who are uninsured, why they are uninsured and how the ACA could impact them.

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Analysis Examines Health and Access for LGBT Individuals

Several recent policy changes, notably the implementation of the Affordable Care Act (ACA) and the Supreme Court’s overturning of a major portion of the Defense of Marriage Act (DOMA), are reshaping the health care and coverage landscape for lesbian, gay, bisexual, and transgender (LGBT) individuals and their families.

A new issue brief from the Kaiser Family Foundation examines what is known about LGBT health status in the U.S., with a focus on concerns such as the HIV/AIDS epidemic, mental health and violence. It also discusses the impact of the ACA and the Supreme Court’s DOMA ruling on health care coverage and access for LGBT individuals.

“Health and Access to Care and Coverage for Lesbian, Gay, Bisexual and Transgender Individuals in the U.S.” is available online.

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The Kaiser Family Foundation, a leader in health policy analysis, health journalism and communication, is dedicated to filling the need for trusted, independent information on the major health issues facing our nation and its people. The Foundation is a non-profit private operating foundation, based in Menlo Park, California.

Congress is drafting the annual federal spending bill as we speak. Buried deep in this bill is a senseless ban on federal funding for syringe access programs. The ban means that states cannot use federal dollars for syringe access programs, even though they save lives by reducing the spread of HIV/AIDS.

Syringe access programs are proven to prevent illness and death, by providing sterile syringes to people who inject drugs and minimizing the transmission of HIV and hepatitis C. These programs also benefit people who don’t use drugs but could still be protected from disease and death. But even though syringe access programs save lives, federal funding for them is banned by Congress because of the misguided war on drugs!

This harmful ban has resulted in hundreds of thousands of people contracting preventable diseases. Medical professionals across the country are being denied one of the most useful tools to fight the spread of HIV/AIDS and hepatitis C.

Congress doesn’t draft a budget very often. The last time it happened was two years ago, when the syringe access ban was sneakily inserted in this dense legislation. Lifting the ban will save lives and taxpayer dollars at no additional cost to the federal government.

Today, you have a chance to make sure the ban is finally lifted. But our window of opportunity won’t last long and lives are hanging in the balance. That’s why your member of Congress needs to hear from you right now: Urge them to end the syringe access funding ban today.

ADRIAN, Mich.—When Medicaid expands next year under the federal health law to include all adults living close to the poverty line, one group of eligible beneficiaries will be several million men and women who have spent time in state and federal prisons and jails.

The Department of Justice estimates former inmates and detainees will comprise about 35 percent of the people who will qualify for Medicaid coverage in the states expanding their programs to anyone earning less than 138 percent of the federal poverty level, or about $15,000 for an individual in 2013. The Congressional Budget Office estimated earlier this year that 9 million people will get that new coverage next year.

In addition, the expansion could help states cover the medical costs of some current inmates who need hospitalization or other expensive specialized care outside of prison.

Michigan, which has long been recognized as an innovator in inmate health care, is expanding its Medicaid program. Officials here say that funding could help cover the needs of some seriously ill inmates as well as provide new coverage for released offenders, which could be a valuable tool in curbing recidivism.

“A significant number have never prepared their own meals. They don’t know how to shop, or how to budget,” said Tammy Meek, prisoner re-entry coordinator for the Gus Harrison Correctional Facility in this small city in southern Michigan. “Some can’t even write their name in cursive. Health care is critical in protecting the public and giving the client [former inmate] the tools he needs to succeed.”

GOP Lawmakers’ Concerns

But the Medicaid coverage for former offenders has stoked the interest of some powerful GOP members of Congress, including one from Michigan, House Energy and Commerce Committee Chairman Fred Upton. He and Health Subcommittee Chairman Joe Pitts of Pennsylvania last month asked the Government Accountability Office to review the effect of the health law’s Medicaid provisions on former offenders. “We must better understand the true costs of expanding the program to any new population and weigh such costs with the competing interests of our nation’s most vulnerable law-abiding citizens,” they wrote.

A Republican committee source said Upton and Pitts simply wanted “updated data” from GAO on “how Medicaid interacts with the criminal justice system” because they were “committed to understanding how every Medicaid dollar” will be spent under the new health law.

A Democratic committee source, however, dismissed the Upton initiative as “a complete red herring” prompted by Republicans’ search “for another way to come up with something that will ding the Affordable Care Act.”

The congressmen’s request notes that some researchers have suggested that large numbers of people added to the Medicaid rolls in an expansion could be prisoners. But ordinary, in-prison health care is not covered by Medicaid. The Medicaid law, passed in 1965, denies federal matching funds for convicted prisoners—about 1.5 million adults nationwide—and for 750,000 unconvicted detainees held for trial or petty crimes and misdemeanors in county and city jails on any given day. Each state, county or city must pay for the medical needs of all detainees from its general funds. The Affordable Care Act does not change this law.

However, since 1997, the federal government has allowed matching Medicaid funds to pay for specialized hospital care for 24 hours or more outside the prison system for inmates who were enrolled in or eligible for Medicaid before their incarcerations. Since most states narrowly draw the eligibility rules for adults, this funding generally covered people such as the frail elderly, patients suffering from serious disabilities and chronic diseases and pregnant women.

Michigan received $8 million in matching funds for that program during the year ending Sept. 30, state Department of Corrections spokesman Russ Marlan said. Next year, when about half the states have agreed to expand their Medicaid programs, the number of these patients should rise dramatically as will the federal matching funds. Marlan said Michigan could receive $20 million in Medicaid funding from the federal government in 2014 to help pay for such specialized treatment of prisoners, “but it’s probably too early to know for sure.”

Potentially far more important for the state’s bottom line, Medicaid expansion will also cover low-income inmates leaving prison.

“Having access to health care and mental health care contributes to their success in staying out of prison,” noted Heidi E. Washington, warden at the Charles E. Egeler correction facility in Jackson, Mich.

Lowering Recidivism

Helping former inmates adjust to the outside world has been shown in many studies to curb recidivism. Michigan, which has used state funds for reentry programs that include health care for nearly a decade, has seen its prison population drop in the past five years from 51,554 to 43,636. For released offenders with special needs—mostly mental disorders—recidivism rates plummeted from 50 percent in 1998 to 22.5 percent in 2012. Michigan spends $35,000 each year for every imprisoned inmate.

But curbing recidivism doesn’t just hinge on having funding from programs like Medicaid, noted Ira Burnim, legal director of the Bazelon Center for Mental Health Law. “These folks have to have services, and when they have access to housing and local support, they do very, very well.”

Michigan in 2005 hired a private company, Professional Consulting Services, to coordinate individual release plans for special needs inmates, serving as an intermediary between the Department of Corrections, state Medicaid officials and outside housing and service providers.

Chief Operating Officer Betsy Hardwick said PCS handles about 1,200 cases at any one time, preparing individual support plans and monitoring inmates for their first nine months on the outside. Hardwick said that 28 percent of the special needs inmates had Medicaid on release, but by the end of their first year in the community, “anecdotally we think between 60 percent and 70 percent are being approved.”

The effort appears to be a critical confidence builder for Martin Baker, 61, a repeat offender for breaking and entering who earlier this month was getting ready for parole at Adrian’s Gus Harrison prison and had been notified that he will have Medicaid upon release.

“I’ve got a bad liver from hepatitis C, and I couldn’t afford any medications on my own,” said Baker, a small but fit gray-haired man who also suffers from bipolar disorder and battled drug issues in the past. “My primary goal is to get my medical situation stabilized and get into a solid recovery program.”

Without insurance, he said, “you feel sick, and it causes you to get depressed and not care, so you say, ‘okay, I’m going out and get a pack of heroin.’ I don’t want that to happen.

Tela Love, a 36-year-old transgender woman who used to work the streets of New Orleans’ French Quarter as a prostitute, has been HIV-positive for nearly 10 years. When she started exchanging sex for money and occasionally drugs, she said, local police arrested her after finding condoms in her bag. She was subsequently incarcerated at Orleans Parish Prison, where another inmate forced her to have unprotected sex with him. She later heard he was HIV-positive, she told Al Jazeera.

Love’s experiences with police harassment and sexual violence in prison partly explain why Louisiana’s death rate from AIDS is nearly double the national average and the New Orleans metropolitan area has the second-highest rate of new HIV infections in the United States, according to Human Rights Watch (HRW).

Megan McLemore, a senior health research director at HRW, told Al Jazeera that Louisiana is not doing enough to curb the spread of the disease. “It is actually undermining the effort to control HIV by its own law and policies,” she said. In a report published Wednesday, she says officials prohibit access to sterile syringes and criminalize sex work, which “contribute to an uncontrolled HIV epidemic and an extremely high AIDS death rate.”

Around one-third of surveyed participants — who all admitted to exchanging sex for food, drugs or money — said police harassment and a subsequent fear of carrying condoms has resulted in unprotected sex. “(Police) are associating condoms with criminality and then using it as a threat of arrest,” McLemore said.

As a result, prostitutes hide condoms under their wigs or between their legs to try to prevent them from being seized, Love said. Another transgender woman told HRW, “I’ve seen other girls being harassed, and I learn to be cautious. I hide (condoms) under my wigs.”

But some individuals report having to resort to more drastic measures to stay out of trouble, such as performing sexual favors in exchange for avoiding jail. Love said she was forced to have sex “with no condom” with an officer.

Another sex worker in the French Quarter told HRW that a police officer took advantage of her vulnerable position: “He went through my purse and found the condoms, then he started asking me how much I charge for a blow job. He said if I wanted to go free I had to give him a blow job, because the condoms were reason enough to bring me in. So I did it and he let me go.”

McLemore said other police departments have already stopped the harmful practice of seizing condoms and have understood their potential to help prevent the spread of HIV and other sexually transmitted diseases. The Metropolitan Police Department (MPD) in Washington, D.C., now distributes leaflets or “condom awareness cards” to community workers and transgender advocacy groups to raise awareness about rights.

“Individuals are allowed to carry as many condoms as they want,” the card reads. “There is no ‘three condom rule.’ MPD officers cannot conduct a stop or conduct a search of a person or premises based on whether or not that person possesses condoms.”

Remi Braden, public affairs officer at the New Orleans Police Department, told Al Jazeera the NOPD has not received any record of the allegations in the HRW report. The department is “committed to investigating any and all complaints filed against our officers,” she said.

“The NOPD takes such allegations very seriously, and conducts thorough investigations into accused officers. Officers found to have violated departmental policy or law are disciplined and, in some cases, suspended or terminated,” she added.

Wesley Ware, director of BreakOUT!, an advocacy group against discriminatory policing and profiling of LGBT women of color in particular, told Al Jazeera the issue is “an ongoing problem.” In May, the group successfully campaigned for the adoption of an NOPD policy against gender profiling, he said. “However,” Ware noted, “the implementation of that is a different story. We’re still continuing to hear reports of people being stopped, profiled without any reasonable suspicion or probable cause.”

‘A deadly vicious cycle’

Incarceration is another major influence on Louisiana’s high HIV rate, the HRW report found. Even though Orleans Parish Prison provides testing for every inmate staying for more than one week, it is under federal oversight for failing to protect its inmates against sexual assaults and other forms of harm, the report said.

“People use bread bags or rubber gloves (for protection), but it’s rare that people actually even use them,” Love said. “It’s very dangerous. It makes you bleed worse. The likelihood of that being a good barrier is none.”

Love said a social stigma on taking medication against HIV also increases the risk of infection while in prison.

“The staff are very unprofessional,” she said. “They broadcast your business.” When prisoners are queuing at the doctor’s office for pills, she said, the staff tells everyone, “They got HIV. Better watch that punk.”

And once an inmate is released, the fear of police harassment for carrying condoms exacerbates the problem.

Someone can enter jail HIV-free, Love said, but “when she comes out of jail she probably won’t be. There’s a very good chance. And then she’s intimidated and afraid to use condoms.”

“It’s a deadly vicious cycle.”

Another factor fueling New Orleans’ HIV epidemic is the dearth of public syringe-exchange programs, which in New York have effectively lowered the number of new HIV infections from 12 percent to 4 percent, the report said. Syringes are classified as drug paraphernalia in New Orleans, McLemore explained; their receipt is illegal, but their distribution is not.

The only functioning clinic in the city opens for two hours on Friday afternoon and fails to adequately serve the needs of drug users, according to the HRW report. Elizabeth Jones, who once directed the Drop-In Center’s syringe exchange, told HRW: “As a medical facility, the law protects us but not our clients. They can still be charged with possession of a syringe.”

Poverty further complicates the problem in New Orleans. In the wake of Hurricane Katrina, nearly one in four residents lives in poverty. But for Love, who was forcibly displaced after the storm, the move offered a way out of a life mired in drugs and prostitution. At her temporary home in Atlanta, she came in contact with other transgender women who served as role models and ultimately inspired her to found New Legacy Ministries, a nonprofit organization that aims to provide support for transgender individuals, she said.

It’s time to take the initiative to “SAVEOURSELVES!” she wrote on her website.

The New Orleans Public Health Department wasn’t available for comment at the time of publication.

Washington, DC—A letter released today by over 70 Maryland-based doctors, nurses, and professors representing esteemed leaders in the medical field urges immediate action by Congress to lift the ban on federal funding for Syringe Services Programs (SSPs), calling on Maryland Senator Barbara Mikulski to push her colleagues on the issue.

As the Senate Appropriations Chair, Sen. Mikulski is in a unique position to lift the ban — an action that “would not involve the appropriation of a single additional federal dollar; the change would simply allow local and state medical authorities to spend federal dollars they are given as they see fit.” Further, in a political climate where healthcare cost-savings in particular are paramount, “for every dollar spent on SSPs, an estimated $3-$7 are saved in HIV treatment costs.”

“The federal ban has been in place since December 2011, after language was inserted into Appropriations legislation, and it has been detrimental to the health of Americans and the fight against HIV/AIDS ever since, especially those in your home state of Maryland,” the signatories highlight for Sen. Mikulski. It notes the many benefits of SSPs include cost-savings, increased linkage to drug addiction treatment, and support from law enforcement.

“Ending AIDS in the United States means basing our policy on science rather than ideology, and SSPs are critical, proven interventions in our fight against HIV/AIDS and hepatitis C. Our community considers having Senator Mikulski as Chair of the Appropriations committee a boon, given her history of supporting effective public health policy, including lifting this highly detrimental syringe funding ban,” says Christine Campbell, Vice President of National Advocacy & Organizing at Housing Works. “If Congress passes the current budget deal, it is critical that Sen. Mikulski prioritizes lifting the ban in Senate negotiations and galvanizes her House colleagues as well, both for her constituents and the nation.”

Assuming the recent budget deal is adopted by Congress, the Appropriations committee will draft an omnibus bill to fund non-defense discretionary programs of the government, including health-related programs. This process offers the opportunity to replace language enacting the ban such that local and state authorities have full control over their funds.

As the letter’s signatories emphasize, “there are few occasions when members of the medical community can unite and advocate for a public health program that costs nothing, saves taxpayer dollars, and saves lives. This is one of those occasions.” On the heels of World AIDS Day, with the 2013 theme “Shared Responsibility: Strengthening Results for an AIDS-free Generation,” Congress should remember – actions speak louder than words.

OVER 70 MARYLANDMEDICAL & PUBLICHEALTHPROFESSIONALSURGECONGRESS TO LIFTFEDERALBAN ON SYRINGEFUNDINGJohns Hopkins University and University of Maryland doctors send Sen. Barbara Mikulski (D-MD) letter calling for action in the wake of budget agreement.

FORIMMEDIATERELEASE:
12 December 2013

Contact: Christine Campbell
202-408-0305
campbell@housingworks.org

Washington, DC—A letter released today by over 70 Maryland-based doctors, nurses, and professors representing esteemed leaders in the medical field urges immediate action by Congress to lift the ban on federal funding for Syringe Services Programs (SSPs), calling on Maryland Senator Barbara Mikulski to push her colleagues on the issue.

As the Senate Appropriations Chair, Sen. Mikulski is in a unique position to lift the ban — an action that “would not involve the appropriation of a single additional federal dollar; the change would simply allow local and state medical authorities to spend federal dollars they are given as they see fit.” Further, in a political climate where healthcare cost-savings in particular are paramount, “for every dollar spent on SSPs, an estimated $3-$7 are saved in HIV treatment costs.”

“The federal ban has been in place since December 2011, after language was inserted into Appropriations legislation, and it has been detrimental to the health of Americans and the fight against HIV/AIDS ever since, especially those in your home state of Maryland,” the signatories highlight for Sen. Mikulski. It notes the many benefits of SSPs include cost-savings, increased linkage to drug addiction treatment, and support from law enforcement.

“Ending AIDS in the United States means basing our policy on science rather than ideology, and SSPs are critical, proven interventions in our fight against HIV/AIDS and hepatitis C. Our community considers having Senator Mikulski as Chair of the Appropriations committee a boon, given her history of supporting effective public health policy, including lifting this highly detrimental syringe funding ban,” says Christine Campbell, Vice President of National Advocacy & Organizing at Housing Works. “If Congress passes the current budget deal, it is critical that Sen. Mikulski prioritizes lifting the ban in Senate negotiations and galvanizes her House colleagues as well, both for her constituents and the nation.”

Assuming the recent budget deal is adopted by Congress, the Appropriations committee will draft an omnibus bill to fund non-defense discretionary programs of the government, including health-related programs. This process offers the opportunity to replace language enacting the ban such that local and state authorities have full control over their funds.

As the letter’s signatories emphasize, “there are few occasions when members of the medical community can unite and advocate for a public health program that costs nothing, saves taxpayer dollars, and saves lives. This is one of those occasions.” On the heels of World AIDS Day, with the 2013 theme “Shared Responsibility: Strengthening Results for an AIDS-free Generation,” Congress should remember – actions speak louder than words.

Housing Works is a healing community of people living with and affected by HIV/AIDS. Our mission is to end the dual crises of homelessness and AIDS through relentless advocacy, the provision of lifesaving services, and entrepreneurial businesses that sustain our efforts.

President Obama’s significant commitment of $100 million in funding for HIV/AIDS treatment research will surely bring us closer to a cure. But hand in hand with even the best treatment should be better prevention.

High HIV infection rates among women around the world point to an urgent demand for new prevention methods that specifically address women’s health needs. Every minute, a young woman is infected with HIV. Married women, or those in committed relationships, are at particular risk of infection because only 8 percent of couples around the world use condoms.

It is time to turn our collective will toward finding methods that protect women from HIV and other sexually transmitted infections at the same time as preventing unplanned pregnancy. Multipurpose prevention technologies are a new class of products in development that do just that. What stands in the way of advancing the field may be how women’s health issues are funded.

Sexual and reproductive health is generally understood as a subdiscipline of women’s health care, but HIV and reproductive health research operate with separate funding streams and discrete research disciplines that tend not to cross-pollinate ideas, share findings or collaborate. The Initiative for Multipurpose Prevention Technologies is an international collaboration that bridges this gap by bringing together researchers, funders, developers and women’s health advocates across disciplines. These medications and devices are designed specifically to be female initiated and to offer women more choices to address their interlinked health needs.

For example, the sexual and reproductive health risks Priscilla and Clara face are multiple and interconnected.

Priscilla is 26. She lives in Cape Town, South Africa. She is married with two young children. She would like more children, but not immediately. Her husband works in a different city and is away for many weeks at a time. She worries about acquiring HIV. Priscilla would like to use condoms to protect herself and prevent an unplanned pregnancy, but her husband refuses.

Clara is 19. She lives in San Francisco and works part time and is in college. She used condoms intermittently with her first boyfriend, but worried about having an unplanned pregnancy. She went on the pill with her next boyfriend and used condoms for sexual diseases prevention, including for HIV, but the longer they were together, the less frequently they used them. She contracted chlamydia, increasing her chances of HIV infection.

The field needs more collaboration. Funding agencies, investors and product developers who are focused on interventions for women should take a more comprehensive approach to reproductive health. Investing in multipurpose technology development and strengthening linkages between research fields will advance the sexual and reproductive health needs of women everywhere – and help stop the spread of HIV.

Women’s health concerns worldwide, by the numbers

87 million
Unintended pregnancies a year

54
Percentage of adults living with HIV who are women

1 million
Number of people who acquire a sexually transmitted infection every day. Without treatment, some sexually transmitted infections increase women’s risk for infertility and cancer and increase their susceptibility to HIV infection threefold or more.

Source: World Health Organization; UNAIDS

Bethany Young Holt is the executive director of the Coalition Advancing Multipurpose Innovations, a project of the Public Health Institute; Manjula Lusti-Narasimhan is a scientist with the World Health Organization. Both writers are with the Initiative for Multipurpose Prevention Technologies.

Chicago, United States – Maria Mejia grew up in an abusive household, so at the age of 13 she ran away from home and joined a gang in search of a sense of family. Soon after, she began dating the leader of the gang, a drug user, who infected her with HIV.

Mejia estimates she was infected between 1988 or 1989, when she was about 15 or 16 years old. She says she was diagnosed by sheer coincidence. Tired of the gang life, she decided to move back home and then joined the Job Corps in Kentucky, which required routine medical tests. A week before her 18th birthday, a doctor incorrectly informed that she had AIDS when she was, in fact, HIV-positive.

Distraught and confused, Mejia says she moved back home to Miami to die. Her mother, whom she describes as an “ultraconservative Catholic Latina”, told her, “We’re going to put this in God’s hands”, and asked her not to tell anyone in the family. Even though her mother’s shame was hurtful, Mejia said she was only trying to protect her.

In 2000, Hispanics became the largest minority group in the US, and they currently account for 16 percent of the population.

According to the Centers for Disease Control, Hispanics account for an estimated 19 percent of people living with HIV (220,400 persons) and an estimated 21 percent of new infections (9,800) in the United States each year. About one in 50 Hispanics will be diagnosed with HIV during their lifetime.

The rate of new HIV infections among Hispanic men is almost three times higher than that among white men, and the rate of new HIV infections among Hispanic women is more than four times that of Caucasian women.

Cultural stigma

Though many cultures stigmatise HIV, some say that attitudes towards HIV in the Hispanic community are deeply rooted in beliefs about sex.

“Sex stigma in our community is at the root of HIV stigma. Those values are still embedded in our psyche,” says Lorenzo Herrera y Lozano, a writer and HIV prevention volunteer who was diagnosed with HIV when he was 21 years old. “For me, it’s a reminder of how I violated the social contract of being a Mexican man.”

Herrera y Lozano says the shame surrounding HIV and sex stems from Catholicism, which holds that the primary purpose of sex is to procreate. “How do we hold our culture close to our heart, and how do we hold it to the light?” he asks. “As we continue to push against conservative norms, we will see more advances.”

According to the CDC, the stigma associated with HIV and homosexuality can contribute to the spread of HIV in Latino communities. Machismo attitudes, for instance, can keep some men from acknowledging risky behaviours, such as male-to-male sexual contact.

Before he informed his mother of his diagnosis, Herrera y Lozano says he first had to tell her he was gay. He says she was more concerned about his sexuality and asked whether he could also be treated for being gay. His father, who is older and a conservative Mexican man, still doesn’t know about his son’s HIV status. Herrera y Lozano says he believes it’s easier for both of them to keep it this way. “All he had was the information that the media provided,” he says.

Viviana Maldonado has experienced HIV stigma second-hand. When she was 14 years old, her father tested positive for HIV. He was married, had three children, and was a well-respected pastor in a rural Nebraskan community. She says he contracted the disease in the 1980s, but was not diagnosed until 1995 because of shame, guilt, and denial. To this day, she and her family still don’t know how he contracted it.

Though her father’s family and community were supportive throughout the entire experience, Maldonado says her father never talked about the origins of the disease.

“My mom asked him, but he would not budge. Deep down he had that Catholic mentality,” she says. Maldonado says she continues to grapple with the aftermath more than a decade after her father’s death. “I struggle with it more now as an adult. I feel like I’m not allowed to talk about it,” she says.

Socio-economic barriers

“To truly turn the tide on HIV in the Latino community, we must also confront the harsh social and economic realities that place some Latinos at greater risk for HIV,” Janet Cleveland, a deputy director of HIV/AIDS Prevention, told Al Jazeera in an email.

Cleveland points out that – in addition to the fear of stigma – access to healthcare, language barriers, and concerns about immigration status are significant factors contributing to HIV rates.

According to Planned Parenthood, Latinos are the least likely of all ethnic groups in the United States to be insured. More than a quarter of Latinos also live in poverty, which can prevent them from accessing sexual and reproductive healthcare. Consequently, Latinos experience higher rates of sexually transmitted infections than most other groups of people in the US.

Low-income immigrant women have even higher rates of uninsurance: 60 percent of low-income, non-citizen immigrant women lack health insurance, which is nearly twice the proportion of low-income women born in the US.

Cultural outreach

Lillian Tamayo, president and CEO of Planned Parenthood of South Florida, says her organisation partners with Latino organisations all over the country to tailor their programmes for the Latino community. In addition to providing sex education, HIV testing, access to contraception, and helping patients who need additional care, Planned Parenthood also offers workshops, training, and events to help parents talk to young people about sex.

“We’re not having these conversations with these young people about their bodies. Because of that, we’re putting these young people at risk,” she says.

Meanwhile, Maria Mejia has used her experience with HIV to become an educator and international social media activist. She is especially passionate about educating young people because she believes many of them “are not respecting the virus anymore”.

Mejia says they need to see someone who looks like them and speaks their language in order for the outreach to be powerful. “You can have all the experts you want, but at the end of the day, they still think it’s not going to happen to them,” she says.

Planned Parenthood also uses a “Promotores” model to more effectively reach Latinos. The programme trains people in the community to share their sexual and reproductive health knowledge through group presentations, house parties, and one-on-one outreach.

Tamayo says this can break down barriers since there are many areas traditionally off-limits in Hispanic culture. Women, for example, are often embarrassed to talk about their bodies. Because the model is informal, it can make people feel more comfortable sharing their experiences.

When Dena Hughes learned about the Affordable Care Act’s passage, she rejoiced.

Hughes, who is HIV positive, has struggled to find insurance coverage, because HIV is considered a pre-existing condition. But even under the new law, Hughes said her care providers had advised her not to enroll in the federal health care exchange yet. It is unclear, they said, how the law will affect HIV care when marketplace coverage begins Jan. 1.

“Right now we get good care, and I’m not interested in having my stuff all shifted around,” she said from her Houston home.

Hughes and her husband, Daniel, also HIV positive, receive some health coverage under the Ryan White Care Act, a federal health care program for HIV and AIDS patients. Community advocates expected the Affordable Care Act to provide nearly universal health coverage for HIV patients, freeing up funding from the Ryan White program to cover services beyond primary care.

But many HIV patients in Texas live below the poverty line and are therefore ineligible for subsidies on the exchange. Add Texas’ decision not to expand Medicaid to cover poor adults, and the bulk of low-income HIV patients are missing out on expanded health coverage.

Dena and Daniel Hughes, who have four dependent children, recently started a home repair business and do not know how much they will earn next year.

The stakes are high. If their income is below $31,590 — the requirement for a family of six to receive tax subsidies on the federal exchange — they will rank among the thousands of HIV-positive Texans whose incomes are too low for subsidized private insurance but too high for Medicaid. Roughly 14,000 Texans with HIV used assistance from the Ryan White program to pay for antiretroviral medication in 2011, while nearly 19,000 were not receiving any HIV-related medical care, according to the Department of State Health Services.

Daniel Hughes receives medical care at Legacy Community Health Services, a federally qualified health center in Houston. Katy Caldwell, its executive director, said she had struggled to advise HIV patients about the marketplace with certainty that their health plans would cover all their medications. “You’ve got people on some complicated drug regimens that you want to make sure people stay on, and it’s not as easy as it sounds,” she said.

Referring to patients living below the poverty line, she added, “One of the hard things to explain to people is you’re actually too poor to get help.” At Legacy, 58 percent of patients are uninsured.

Texas’ Medicaid eligibility requirements are among the country’s strictest. For a family of six, adults without a disability must earn less than $4,608 per year to qualify for coverage.

“The fact is that Medicaid is a broken system in need of fundamental reform,” Lucy Nashed, a spokeswoman Perry, said in an email. She added that “Texas has a proven history of providing services and effective HIV medications to HIV-positive Texans through the HIV-STD Program and the Texas HIV Medication Program.”

Katherine Record, a senior fellow at Harvard Law School’s Center for Health Law and Policy Innovation, directed a project that modeled how health reform would affect HIV patients in Texas. She found that roughly 65 percent of Texans who received assistance from the AIDS Drug Assistance Program, a Ryan White program, would be eligible for Medicaid under the expansion.

By comparison, “Pre-ACA, you could only qualify for Medicaid if you proved you were disabled, which pretty much meant having your HIV progress to full-blown AIDS,” she said.

For Santiago Estrada, a 53-year-old patient in Abilene, AIDS allowed him to enroll in Medicare, which covers his antiretroviral medication. He said the drugs alone would have cost him $2,000 per month out of pocket.

Estrada visits the Big Country AIDS Resources center in Abilene for care. He says the “wraparound” services the center provides with Ryan White funding, like assistance with nutrition and transportation, are paramount for his well-being.

Betty Sims, the center’s executive director, says the Affordable Care Act could mean big changes for many of her clients’ access to coverage. But for the 48 percent of her clients who live below the federal poverty line, most have never qualified for Medicaid “and are really left out in the cold,” she said.

Advocates say demand for transportation services ranks highly among the wraparound benefits that Ryan White money could assist with, if more HIV patients had primary care coverage under the Affordable Care Act. For Sims’ clinic and others that serve large rural populations, patients’ lack of access to a vehicle is a significant obstacle to HIV care. “There’s only one infectious disease specialist in the 19 counties we serve,” Sims said. The center has partnered with infectious disease physicians at Texas Tech University to consult with patients electronically.

“The Ryan White services that we provide are going to continue to be needed here no matter whether people have access to insurance or not,” Sims said.

One way states have sought to make the most of their Ryan White money under the new health law is to use the AIDS Drug Assistance Program funds to pay for HIV patients’ insurance premiums, rather than purchasing expensive drugs directly. Because the Affordable Care Act requires insurers to cover pre-existing conditions like HIV, “in almost every case now it will be cost-effective” to spend the money on HIV patients’ insurance premiums, even if they do not qualify for subsidies, said Ann Lefert, director of policy and health care access at the National Alliance of State and Territorial AIDS Directors.

Christine Mann, a spokeswoman for the Texas Department of State Health Services, said the agency was looking into such a measure.

Many advocates expect Texas to expand its Medicaid program eventually. But in the meantime, Ryan White funding will continue to shoulder primary care costs for the majority of impoverished Texans with HIV.

“They call it payer of last resort,” Dena Hughes said of that coverage. “But for some people, it’s the payer of first hope.”

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Image: Gallery — Body Counts; “This was right after the police forced us (the TAG Seven) to deflate the giant condom we had put over the home of notorious homophobe U.S. Senator Jesse Helms in September of 1991. That’s me on the upper right, wearing my Silence = Death t-shirt.”

In my new memoir Body Counts, I write about the People With AIDS Coalition in New York. They and other early networks of people with HIV played an incredibly important role helping newly-diagnosed people cope. They supported me after I was diagnosed in the mid-1980s. PWAC and similar groups gave us strength to disclose our HIV status to others. They helped us deal with hostile or frightened families, friends and employers. They helped us survive life in an indifferent society and an apathetic or aggressive political structure. These networks were a manifestation of the people with HIV empowerment movement as envisioned in the 1983 Denver Principles manifesto.

But as time passed, support for those networks diminished. Many of them went away. The empowerment movement for people with HIV, initially modeled after the women’s health movement, changed and became more focused on ACT UP-style political protests and street demonstrations. Ultimately, “treatment activism” supplanted the empowerment movement as personified by Michael Callen, Amy Sloan and others in the early years.

Treatment activism has expedited access to the drugs that saved many of us, myself included. But the human rights approach to the epidemic—protecting confidentiality, patient autonomy, combating stigma—were suddenly no longer priorities. The consequences of this shift are numerous. HIV criminalization cases, for example, have increased dramatically.

But there is hope: more recently, recognition has taken root for issues of legal barriers and stigma. And, to my great delight, the networks of people with HIV are on a rebound, once again asserting our right to a voice in the policy and decision-making that profoundly affects our lives.

One great development is the creation of the U.S. People Living with HIV Caucus. This is a constructive, efficient and respectful collaboration between national and local networks of people with HIV. I am proud to be a part of it.

The mission of the caucus is a simple one: speak with a unified voice for people with HIV in the U.S. When that voice was muffled in the past, we suffered. But the establishment of this caucus places us on a great track for the future. I’m so proud of everyone involved with the caucus, especially Executive Committee members Cecilia Chung, Naina Khanna, Barb Cardell, Vanessa Johnson and Andrew Spieldenner. They’ve invested a lot of energy and expertise to make this happen.

To support this Caucus, we ask that you support or engage in a network of people living with HIV, either locally or nationally. They are the Caucus.

Domestic workers have had some breakthrough wins over the past two weeks. Up until then, these workers were excluded from protections such as a guaranteed minimum wage, paid breaks, and overtime pay. On September 17, the Obama administration announced new rules extending the Fair Labor Standards Act to include the 800,000 to 2 million home health workers—who help seniors and others with self-care tasks like taking medications, bathing, and shopping—under the federal government’s wage and hour protections.

Next, California governor Jerry Brown signed into law the Domestic Workers’ Bill of Rights on September 26, allowing the full spectrum of domestic workers—including live-in nannies and housekeepers—to benefit from the same gains as the home health workers.

For the first time ever, these employees will be guaranteed the federal minimum wage and will earn overtime pay. And their victories have implications for a much larger portion of the workforce, including independent contractors, nontraditional employees, and those on temporary assignments. The domestic employees’ wins are helping to chart a path forward for the growing number of employees who work outside conventional office settings.

Much of the credit for these historic wins is due to the tenacious organizing of the National Domestic Workers Alliance, a group of workers in this field who advocate for their own rights. Led since 2010 by the dynamic young organizer Ai-Jen Poo, the NDWA has grown from a single chapter in New York City to a nationwide organization with campaigns for domestic workers’ rights in 19 cities and 11 states.

Here are five lessons that the wider progressive community can draw from the victories.

1. Local struggles can have national impact.

Before the creation of the National Domestic Workers Alliance, the New York-based organization Domestic Workers United started by organizing locally. After winning passage of the Domestic Workers’ Bill of Rights in New York state, the group took their campaign on the road. The alliance won a second state-level victory in Hawaii, and then began organizing nationally with the message that those who care for elders and people with disabilities deserve respect. (It helped that this message was already reverberating across the globe after the International Labor Organization ratified its Convention on Domestic Workers in 2011.)

Having campaigns at the local, state, and national levels gave the NDWA the flexibility to focus where victory was most likely. Massachusetts is likely to be their next state-level target, Poo told Nation columnist and YES! Magazine Local Economies Reporting Fellow Laura Flanders.

2. Crunch your own numbers.

Rather than defensively responding to reports by business groups and state agencies, the NDWA created its own, from-the-ground-up reports and analyses on the working conditions domestic employees face in America.

Developing the capacity to contribute to the research around domestic work allowed the alliance to set the terms of debate. Other groups can use the same technique to frame the public agenda—whether around city planning, state budget priorities, or federal reforms.

3. Put working people front and center.

The NDWA used Caring Across Generations to shine the spotlight on caregivers—who are often only seen publicly pushing a client in a wheelchair—and to show how much they do for their clients.

When Ai-Jen Poo appeared in cable news shows and magazine articles, she constantly pointed to the stories of domestic employees and thus kept the spotlight fixed on them. Putting real people’s stories forward as the basis for the campaign’s argument created public sympathy and understanding.

4. Find allies beyond the usual ones.

Although groups that hire home care employees could be seen as “the enemy,” the NDWA partnered enthusiastically with them. In New York and California, for instance, the alliance worked with Hand in Hand, a national association of caregiver employers who were willing to take a stand on behalf of their employees’ right to fair pay and labor conditions. Hand in Hand’s website even offers a toolkit for employers, with guidance on how to become a better employer.

Employers like Hand in Hand join the campaign not out of an impulse to charity, but because they know that fair national standards for home-care employees helps ensure better care for their loved ones. As Ai-Jen Poo said recently in a video for the PBS series Makers: “When it comes to human dignity, there is no such thing as an unlikely ally.”

Another way that the NDWA cultivated alliances was through the careful coalition-building that went into forming Caring Across Generations, a campaign that seeks to ensure that seniors receive the heath care they need from workers who receive a living wage. Launched in 2011, the coalition’s unusually broad range of member groups includes organized labor, seniors, faith-based groups, women’s rights organizations, and anti-poverty groups.

The different members have come together around a unifying vision for improving the lives of those who serve our youth and our elders. By joining across different organizing traditions and constituencies, they created a far-reaching effort that goes beyond the typical single-issue campaign.

5. Victory begets more victory.

Small victories can be an effective motivator on the road to bigger ones. By stringing together a series of international, national, and local victories—none of them complete in themselves—the NDWA showed that change is possible and created momentum for ever-greater wins. And the NDWA’s campaign for a Domestic Workers’ Bill of Rights is still moving forward, with active drives in Massachusetts, Connecticut, Washington, Illinois, and Oregon.

The NDWA’s record of steadily organizing with their eyes on a clear prize of policy solutions, recognition, and respect should serve as an inspiration. The movement’s relevance isn’t just the fact that they are winning; how they fight matters, too. Any movement that can transform adversarial employee-employer relations into a unified force for public policy change is worth learning from.

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Amy B. Dean wrote this article for YES! Magazine, a national, nonprofit media project that fuses powerful ideas and practical actions. Amy is a fellow of The Century Foundation and principal of ABD Ventures, an organizational development consulting firm that works to develop new and innovative organizing strategies for social change organizations. Dean is co-author, with David Reynolds, of A New New Deal: How Regional Activism Will Reshape the American Labor Movement. You can follow Amy on twitter @amybdean, or she can be reached via www.amybdean.com.

New York, NY (December 2013)—Housing Works is pleased to announce the opening of 874 Jefferson Avenue, a 12-unit residence in the Bedford Stuyvesant neighborhood of Brooklyn. Several years in the making, the Jefferson Avenue residence consists of the gut renovation of a vacant row house, into a beautiful facility for 12 homeless individuals living with AIDS. A ribbon-cutting ceremony attended by the first tenants to occupy the building will be held this Friday, December 13th at 10:30am.

The $3M project received capital funding from the New York State Homeless Housing and Assistance Program, the United States Department of Housing and Urban Development Supportive Housing Program, the Federal Home Loan Bank Affordable Housing Program, and the NYC Department of Housing Preservation and Development Neighborhood Stabilization Program. Operating funding at 874 Jefferson will be provided by the NYC Department of Health and Mental Hygiene and the United States Department of Housing and Urban Development Supportive Housing Program.

Supportive services will be available to residents on or off site through Housing Works. These services will include case management, independent living skills training, health care, mental health care, harm reduction services, and eligibility to enroll in the Housing Works Job Training Program.

The population for 874 Jefferson will reflect Housing Works’ overall client population, all of whom are low-income, 91% of whom are African-American, Latino, or other minority, and one-third of whom identify as gay, lesbian, bisexual, or transgender. Residents at 874 Jefferson will share extended histories of chronic homelessness, mental illness, and/or chemical dependence.

Client Debra Edwards is one of the 12 residents who will move into permanent housing at 874 Jefferson on Friday and receive its services. She has completed her GED and 19 college credits and is being supported by SSI and food stamps from HASA. She currently resides at WTHP (Housing Works, Women’s Transitional Housing) program. Her case management team is assisting her with permanent housing, mental health, sobriety and employment. After years of alcohol and cocaine abuse she has now achieved sobriety of for 96 days and completed a rehab program at Rhinebeck rehab (Upstate NY), September 27th.

“I’m starting a new journey in my life that Housing Works help me to achieve,” says Ms. Edwards. “I have been in the shelter system for 14 months and never want to experience that again. This place will give me a new home to go with my new life.”

Each unit at 874 Jefferson will contain a full kitchen that is separate from the living area; space for a kitchen table, coffee table, and lounge chair; and a full bathroom. The ground floor of the facility will include a lounge and space for support staff, office equipment, and a staff kitchen. All residents will have access to a rear yard and rooftop terrace. In addition, environmentally friendly features at the building include a green roof, flooring made from recycled material, LED lighting, and no-VOC paint.

Much of the additional funding raised for the Jefferson Avenue Residences was procured through Housing Works Annual Design on a Dime Benefit. The annual fundraiser celebrated it’s 10th anniversary and raised over one-million dollars to complete construction just last spring. This year’s event will continue to raise funds for the expansion of supportive housing and will be held on April 24th 2013.

Today, Tuesday, December 3, is “National HUD Funding Call-In Day!” As early as next week, the conference committee tasked with coming up with a topline spending level for fiscal year (FY) 2014 is expected to come to some sort of deal that will set FY 2014 spending levels and may replace sequestration. The deal, and subsequent spending decisions over the next few weeks, could have a tremendous negative impact on funding for the Department of Housing and Urban Development (HUD). Join the Alliance and its partners across the country to call your Members of Congress TODAY to tell them the negative impacts further funding cuts would have on your communities and the need for more HUD funding!

We must make sure to impart to our Members the importance of housing and homelessness programs in our communities before a final deal is made. Call your Members of Congress TODAY as part of a National Call-In Day!

Here’s what you can do:

1. Call your Senators and Representative(s) TODAY and ask to speak to the person who handles housing issues. You can reach their offices by calling 866.898.2624.

We must urge the conference committee to replace sequestration in order to protect HUD funding before the conference committee’s December 13 deadline to issue a report to Congress. Coming to agreement on an FY 2014 budget that cancels sequestration will allow appropriators to pass individual funding bills instead of a continuing resolution (a long-term stopgap funding measure at FY 2013 funding levels), which would harm housing and community development programs. Key HUD programs like the McKinney-Vento Homeless Assistance Grants will fare far better in an individual funding bill than a stopgap funding measure. Following the cuts in the FY 2013 NOFA (see below), we can’t afford further cuts!

We must seize this opportunity to impact the conference committee and work to make homelessness a thing of the past. Take this opportunity to call your Members’ offices and tell them how important these programs are to your community. A ten-minute call could have a tremendous impact on funding for people at risk of or experiencing homelessness.

House Votes to Extend Federal AIDS Programs by Pete Kasperowicz for The Hill

The House on Tuesday quickly passed legislation that would extend for five years federal programs and funding aimed at combating HIV/AIDS around the globe.

Members passed S. 1545, the PEPFAR Stewardship and Oversight Act, in a voice vote. PEPFAR is the President’s Emergency Plan for AIDS Relief, the U.S. initiative to help with AIDS relief that was launched under the Bush administration in 2003.

The bill extends a requirement that the Department of State, Broadcasting Board of Governors, Department of Health and Human Services and U.S. Agency for International Development continue to work together on plans to combat global HIV/AIDS.

It also extends funding commitments to the Global Fund to Fight AIDS, Tuberculosis and Malaria. Included in the bill is a requirement that U.S. contributions to the fund are capped at 33 percent, language that is seen as helping to encourage donations from other countries.

“This bill is time sensitive,” said House Foreign Affairs Committee Chairman Ed Royce (R-Calif.). “During the week of December 1st, the Global Fund will convene a donor’s conference.”

AIDS service organizations are applauding the House of Representatives’ recent decision to allow people living with HIV to donate their organs to other people living with HIV. The passage of the HIV Organ Policy Equity (HOPE) Act, which is awaiting President Barack Obama’s signature, could save the lives of more than 1,000 PLWHAs with liver and kidney failure each year.

“Since the ban was implemented in 1988, the development of Highly Active Antiretroviral Therapy (HAART) has significantly improved the life expectancy of people living with HIV,” said Jason Cianciotto, GMHC’s Director of Public Policy. “As a result, the population living with HIV in need of organ transplantation has grown significantly. The HOPE Act is a critical step toward ensuring that people living with HIV can give and receive the gift of life. [It] is not only a scientifically sound public health policy, but also a great act of compassion.”

The HOPE Act would allow donated, HIV-positive organs to be used for transplants to other HIV-positive patients. For the past 25 years, federal law has prohibited this medical procedure. But the HOPE Act will now direct the Department of Health and Human Services and the Organ Procurement Transplant Network (OPTN) to develop standards for research on HIV-positive organs, and permits pos-to-pos transplants if research determines this is warranted. This research is expected to take about a year, according to Johns Hopkins University transplant surgeon Dorry Segev.

“Thanks to the HIV Medicine Association (HIVMA) and many other advocates for their tireless work in leading the passage of the HOPE Act though Congress. Lifting the ban will save many lives and reduce health care costs,” said Chris Collins, amfAR’s Vice President and Director of Public Policy.

OPTN must develop standards to ensure that these transplants do not impact the safety of the organ transplantation network. The legislation also amends federal criminal law regarding HIV transmission to clarify that these organ donations are not barred.

There are also some concerns about “superinfecting” another HIV-positive patient with a second strain of the virus through such a transplant. More research will be needed to determine how immune-boosting ARVs will interact with the transplant drugs that prevent rejection of donor organs. Some research has suggested that PLWHAs are more likely to reject organ transplants.

In addition to saving the lives of hundreds of PLWHAs, the HOPE Act will also make more organs available for transplant. There are currently more than 100,000 patients waiting for life-saving healthy organs, with 50,000 more added each year. Allowing PLWHAs to donate organs to other PLWHAs will take an estimated 600 of these patients off the list, shortening the general waiting list for uninfected people.

“By reforming outdated policies banning all HIV-positive organ donations, Congress has provided hope not only to the thousands of people living with HIV in desperate need of a transplant, but also HIV-negative individuals who will benefit from the decrease in demand for uninfected organs,” said National Minority AIDS Council (NMAC) Director of Legislative and Public Affairs Kali Lindsey.

Passage of the HOPE Act will save lives and help break down the stigma associated with HIV/AIDS, said amfAR’s CEO Kevin Frost, adding that, “This legislation makes federal organ donation regulations more reflective of the evidence and allows for critically important research to move forward.”

Senators Barbara Boxer, Tammy Baldwin, Tom Coburn and Rand Paul introduced the legislation in the Senate, with Rep. Lois Capps introducing it in the House. It passed unanimously in the Senate and House Committee on Energy and Commerce this summer, and on Nov. 12, it passed in the House, also by unanimous consent. It now awaits signature by the President.

“NMAC applauds Congress for taking action on this important piece of legislation,” added Lindsey. “In particular, we thank Senators Barbara Boxer and Tom Coburn, as well as Representatives Michael Burgess, Lois Capps and Andy Harris, whose bipartisan leadership was critical to the law’s passage. Their efforts are a sign that Republicans and Democrats can still work together for the good of our nation and its citizens.”

Kelly Price knows too well the pain of infected teeth and how they become so sensitive it hurts to eat or drink. He has suffered with that in the past and still has several teeth that need to be extracted, but the 51-year-old unemployed machinist can’t afford to see a dentist.

That’s why on a morning last month he was helping out at the Food Bank of South Central Michigan filling bags for weekend meals for needy children with Special K cereal, cans of spaghetti and meatballs, green beans, and a juice drink.

The hours Price volunteers inside the sprawling warehouse in “cereal city” will help him get to see a dentist for free. “I would rather pay with cash, but if this is the only way I can do it [that’s] fine because I am helping someone else and it all works out,” he said.

Price is one of the more than 4,000 adults who since 2007 have received care under the Calhoun County Dentists’ Partnership — a privately financed program that requires patients to perform some volunteer work to qualify for the free dental services. The “pay it forward” model enables low-income, uninsured patients to earn their care by helping local nonprofits, including the local homeless shelter, Red Cross and Salvation Army.

The effort, being replicated in a dozen other communities such as Springfield, Mo., and South Bend, Ind., fills a crucial need because the federal health law, which expands insurance coverage to millions of people, does nothing to improve adults’ access to dental care. The law expands dental coverage only to children.

Kip Etheridge, a dentist who sees patients from the program in his office a few hours a month, said the volunteer work makes them more vested in their care and reduces the number of people who don’t show up for the program’s dental appointments.

“It’s not free care, they work for it and that aspect is what has encouraged dentists to participate,” Etheridge said.

The program has attracted attention from dentists across Michigan and federal health officials.

“The Calhoun County program epitomizes the best kind of private sector, community-based solution to access-to-care problems,” said Norm Palm, president of the Michigan Dental Association. “This program is organized in a way that everyone can win.”

Gap In Care

The use of dental services has declined significantly since 2007, with about 36 percent of U.S. residents seeing a dentist in 2011, according to the America Dental Association. Nationally, more than 73 percent of low-income adults under 65 lack dental coverage, according to a study by the Kaiser Family Foundation (KHN is an editorially independent program of the foundation).

But even that underestimates the problem, because Medicare, the federal program for the elderly and disabled, typically does not cover dental services. Even adults who qualify for Medicaid, the state-federal health insurance program for the poor, have no dental benefits in eight states and in 17 other states only have dental coverage for emergencies such as relief of pain and infection, according to a study commissioned this year by the American Dental Association.

Lacking coverage, many patients don’t seek help until the dental pain gets severe, and then they often head to hospital emergency rooms.

The number of dental visits to hospital ERs doubled from 1.1 million in 2000 to 2.1 million 2010, according to a recent study by the American Dental Association.

In 2006, at least three patients a day were showing up at Bronson Battle Creek Hospital complaining of dental pain, but the facility could offer them only pain pills or antibiotics and urge them to see a dentist. That’s when the hospital, local dentists and community health and business leaders conceived the volunteer model.

The partnership has cut by 70 percent the number of patients with dental pain showing up at the hospital ER, according to a study published in the journal Health Affairs in September.

Patients must volunteer four hours for every $100 worth of care. While some do the minimum, others accrue hundreds of hours so they can use them to obtain dental services for years. To be eligible, people must have incomes below 200 percent of the federal poverty level, or about $24,000 for an individual in 2013, and lack dental coverage.

Before they see a dentist, patients must also attend a two-hour oral health class and be seen by a hygienist, who reviews their health history and does a dental screening and cleaning. That shortens the time the dentists need to spend with the patients and determines which dentist will treat the patient. Dentists decide which services they prefer to offer.

More than 40 dentists participate — or nearly half of those in the county. Most of the dentists provide their services for free. The program offers a $1,000 annual bonus to the dentists, but very few have accepted that, program officials say.

Using money donated by the United Way and local foundations, the program spends $140,000 a year for the two part-time hygienists, a two-person staff to manage the program and dental supplies.

Michigan is one of about 30 states that allow hygienists to work under indirect supervision of a dentist, meaning the dentist does not have to be in the same location as the hygienist. Program officials say that’s been a key component because it makes it easier to schedule patients, keep costs down and reduce the time dentists need to spend with each patient.

‘An Awesome Program’

Ian Gallagher, 31, who has been unemployed since 2009, signed up for the program last month when his tooth started throbbing. He hasn’t seen a dentist since losing dental coverage in 2003. Before his screening exam, he volunteered at Battle Creek Pride, a gay and lesbian advocacy group. “This is an awesome program,” he said while meeting with the hygienist. He is scheduled to have the tooth extracted in November.

Samantha Pearl, executive director of Community HealthCare Connections that runs the partnership, said she estimates the partnership this year will generate about 16,000 hours of volunteer work— or the equivalent of nine full-time workers. “Every person has something that they are uniquely qualified to give and this works when we are all contributing,” she said.

In the past year, the program has expanded so four hours of volunteer service can buy six months of chiropractic treatment. A local orthodontist has offered to help people under age 23. A local lab also has donated its expertise to make dentures.

Pearl said the challenge is keeping up with demand. The dental program is working to lower wait times to see dentists from a few months to a few weeks. With more employers in Michigan dropping health and dental coverage, more people will need help, she said.

Charles Palumbo, a Battle Creek dentist who helped launch the program and has extracted hundreds of teeth from people who have come through it, said volunteering is important for the patients. “We want them to have a sense of dignity as opposed to an entitlement to what is happening,” he said. “We want them to feel like they are paying for services.”

With the health insurance marketplace now open for enrollment, it is essential that all health plans offer adequate coverage and have transparent policies. However, preliminary findings show there is a critical need for easier access to qualified health plan data, and important HIV medications seem to be absent from drug formularies. Both issues demand immediate attention to better facilitate enrollment of people with HIV/AIDS into the Marketplace plans.

Based on a preliminary review conducted by the HIV Health Care Access Working Group (HHCAWG), a coalition of national HIV health policy advocates, several marketplace plan formularies seem to be missing one or more Single Tablet Regimens (STRs) and/or do not provide clear information on drug coverage.

The success of the ACA for people with HIV/AIDS will be determined by whether they have access to the latest treatment advances, one of which is the availability of combination antiretroviral medications, or single tablet regimens. STRs play a vital role in the management of HIV disease, as they significantly reduce daily pill burden, increase adherence and improve health outcomes.

According to HHCAWG, 23 insurance plans exclude STRs in several states, which is inconsistent with the current standard of care for HIV. A majority of public and private health insurance plans cover STRs, including the state benchmark plans that set the minimum standard for pharmaceutical coverage under the Affordable Care Act (ACA). It also appears that accurate information on antiretroviral coverage and in-network HIV providers, which is critical to selecting an appropriate insurance plan, is currently extremely difficult to obtain.

The steering committee of HHCAWG has written letters to express their concern to Secretary Kathleen Sebelius, Department of Health and Human Services (HHS) and Gary Cohen, the Director of Center for Consumer Information and Insurance Oversight (CCIIO). HHCAWG wrote to those insurance companies who have yet to provide appropriate coverage for STRs in Marketplace drug formularies.

The letters highlight the list of plans that exclude STRs in several states, the need to amend formularies to include all STRs allowing people with HIV access to these medications, the need to update plan profiles in marketplace, and the implications of failing to cover STRs, which may result in dangerous disruptions in treatment.

ACA allows many tens of thousands of individuals with HIV to have access to health insurance coverage. However, limiting access to STRs won’t allow HIV patients enrolled in plans to access the simplified drug regimens that promote treatment adherence, putting them at greater risk for developing more serious and costly complications.

Take Action!
Read the sample letter to the insurance companies and advocate for a better coverage by writing to the insurers at your state demanding for better access to care!

New York, NY (November 2013)— On November 20th, 2013, Housing Works will host and celebrate its 10th annual Fashion for Action benefit. Supported by 250 of the fashion industry’s most influential designers, the highly anticipated event will feature an exclusive sale to benefit and advocate New York’s HIV/AID and LGBT Community. Together, with the support of New York’s charitable and social scene, the benefit has raised almost $5 million towards the fight against HIV/AIDS.

As the benefit will take place on Transgender Remembrance Day, proceeds from this year’s event will be dedicated to Housing Works’ HIV-positive transgender clients. All funds raised will provide supportive services including transitional and permanent housing, group therapy, and legal services.

Housing Works will welcome back Oscar-nominated actress Patricia Clarkson as Co-Chair, along with Michael Carl of Vanity Fair, fashion consultant & casting agent, Natalie Joos and new to the event, cutting edge fashion designer Asher Levine.

Levine, known for his progressive style that pushes the boundaries of gender, will breathe new life into this year’s fundraiser. The young fashion maven first emerged into the industry in 2010 creating designs for Lady Gaga. Now just 25, his creative approach to fashion and leather work has been recognized by a number of high profile names, most recently adding Will.i.am to his client roster.

Although Asher’s work is currently available for private clients, guests of the event will be able to shop from his sought after designs in a specially curated shop for the event. “As long as Housing Works continues to spread awareness, HIV’s worst enemy, I will be there to support them with every stitch I can make,” Levine remarks about his involvement.

Opening Night will be held at The Altman Building, located at 135 West 18th Street (between 6th and 7th Ave.). The evening will kick off with a VIP Hour from 5:30 to 6:30 PM followed by the general event from 6:30 to 9:30 PM and will continue as a four-day public designer sale at Housing Works Thrift Shops.

In Dallas (TX) on Tuesday November 5, 2013, Larry Dunn was sentenced to 40 years for fatally stabbing Cicely Bolden in the neck with a steak knife. He did so, he says, because the mother of two revealed to him after having unprotected sex that she was living with HIV. A tragic situation and outcome all around especially for Ms. Bolden’s son and daughter, aged 7 and 9 respectively, who first discovered their mother after coming home from school.

Similar acts of violence fueled by ignorance and fear have dotted the map frequently in the past few years. It is fair to say that Ms. Bolden should have, could have, disclosed her HIV status before having unprotected sex. It’s also worth discussing safe sex options the couple could have chosen. The truth is probably closer to Ms. Bolden’s fear of disclosure at all based on the long and documented history of violence against women in her situation. This same fear more than likely prevented any discussion around safe sex options. Only those two know what prompted Cicely to disclose when she did. A fatal choice that perhaps she didn’t anticipate.

As an HIV positive man, I know men and women like Mr. Dunn. Men and women whose ignorance – sometimes selective and willful – left unchecked and fueled by fear and misinformation grow to divisive and sometimes deadly proportions. This case as much as any is the cry for help needed to ensure adequate and appropriate HIV education disseminated everywhere in generous doses. Arguably more important is the call for modern, accurate, and age appropriate sex and sexuality education given in any and all school aged settings – elementary to adult education.

As much as creating more of these spaces and opportunities for discussion, questions, answers, and sharing we lessen the fear attributed to the unknown and perhaps the conditions that led to a mother being stabbed to death in her own bed.

“[T}o provide documentation that children are HIV negative before entering school is unlawful and immoral. It stigmatizes individuals with disabilities — or their ‘perceived’ disabilities, as there is no indication these individuals have HIV. There is only an unlawful fear that they do.”

With pressure emerging from the media and community members the siblings were allowed to go to class. However, damage has been done.

Pea Ridge Superintendent Rick Neal and the Arkansas Board of Education have essentially committed State sponsored terror by calling HIV a ‘contagious disease’ and publicly outing the children and family by stripping any right of privacy and disclosure. By banning the students in the first place the decision makers in the Arkansas public school system have significantly lessened the probability that some other family will disclose their status — willingly or not. It has justified the irrational fear that exists on all sides regarding HIV infection and care. And of course this fear exists far beyond Arkansas classrooms.

This is the same irrational fear, anger, and ignorance that filled Larry Dunn.

We have to know that we can raise and educate our newest generation with the tools necessary to protect themselves from HIV infection and other health conditions. We have to believe that our children and grandchildren will have the vision and compassion to successfully address sexual and gender-based violence. With growing global diversity and increased cultural visibility and integration with social media, perhaps even racism, along with race-based violence and discrimination will cease to exist.

However, this distant utopia may not even be possible because we can’t seem to protect our children from ourselves.